A Mayo Clinic study published this month in Pacing and Electrophysiology (PACE), suggests that a class of medications more commonly prescribed for older adults is a strong first-line treatment for teenagers with a debilitating condition called postural orthostatic tachycardia syndrome, or POTS.
Phil Fischer, M.D., medical director of Mayo Clinic’s children’s hospital and a POTS specialist, led the retrospective study of teenagers diagnosed with POTS at Mayo Clinic. The patients were surveyed approximately a year after their diagnosis, and while over half of those taking midodrine reported improvement in symptoms, all of those taking β-blockers had felt improvement.
Dr. Fischer provides an overview of POTS, the study results and their implications for treatment of future patients with POTS:
“This is a small study, but it is an important step because POTS is not well understood even within the medical community,” Dr. Fischer explains. “POTS is a real syndrome in which the patient’s heart rate accelerates abnormally when moving from lying down to standing up, and it causes a whole cascade of symptoms from fatigue to stomach upset that are often mistaken for depression. This study points to the important role medications can play, in conjunction with other changes, to help these mostly high-achieving young people get their lives back.”
A more extensive interview with Dr. Fischer providing more background on POTS is available on the Mayo Clinic Podcast Blog.
As you can see from the extensive comments in response to the POTS podcast, there would be no shortage of patients to possibly include in a news story about this study. Another interesting angle is that the brother of the patient featured in the 2006 Mayo Clinic Medical Edge TV story raised the funds to pay for the statistical analysis required for the study on medication effectiveness being reported this month in PACE.
I came to Mayo Clinic and saw Dr. Fischer 5 years ago when I was 12 years old, and he diagnosed me with POTS. I was very fatigued and in a lot of pain. When I first got on a treadmill, I could walk about 2 minutes at 3 miles per hour, and now I go 2 miles in 30 minutes, and I have plenty of energy for my day-to-day life. I was on midodrine for 2 years, and now, as long as I exercise every day I’m fine! Dr. Fischer, thank you so much for all your work on this! I’m very grateful – it certainly helped me!
Megan K
megan, i would to here how you are doing now. my daughter amber at 15 got real sick one year later at texas childrens they told her she has pots. this was only two weeks ago and she is sad with not alot of hope. any comments would be helpful. thanks stacy
I’m sorry to hear your daughter has POTS, I remember it’s not very fun! If you have any questions, feel free to e-mail me at musicmaidenblog@yahoo.com. I would love to encourage your daughter if I can!
Praise the Lord, I am doing excellently. Though I know this is not always the case with POTS. I have a friend who still struggles with it even with different medications. I exercise daily, Dr. Fischer told me I should do 2 miles on a treadmill 6 days a week. I recently started a running program and though it has been very hard (mostly because I can’t breathe – I’m not sure why that is) I can now run 1/2-3/4 miles at a stretch. I run more for the challenge, not for the health benefits; though part of it was I wanted to be able to run again – I haven’t been able to since I was 10 (before POTs).
Dr. Fischer told me three things that I could do: the biggest one was exercise. You have to start really slow, and it takes a long time to work up, but it really helps. The more I exercise the better I feel. The other 2 things were to drink a lot of water and eat a lot of salt. This is because the blood vessels around my heart were floppy, so that may help to firm them up.
Now, I did these three things for a month, and they did not make much of a difference, because I had had POTS too long for it to be effective. So Dr. Fischer put me on medicine. Since I have gone off of the medicine, as long as I exercise, I’m ok. Once we were on an extended vacation and I got slack with exercising, and I started getting dizzy and having headaches again, and even passed out once. So I still have to be careful. Also, if I eat a lot of sugary foods I feel awful, though that may not be connected to POTS.
I hope and pray you are able to find what you need to help Amber!
My youngest son is 14 years old and all symptoms point to POTS – fainting, fatigue, high pulse rate, etc. When I was 19 years old, I had Guillain-Barre Syndrome, with total paralysis and on vent for 40 days. Is there any way I could have given my child an autoimmune and/or neurological disorder?
In answer to Tracey C.- there is no question that POTS and other forms of dysautonomia have genetic components. My daughter has POTS and belongs to an organization called Dyna Kids. Many of these kids have siblings with disautonomia. I’m a migraineur, as are a number of the parents in the organization. Some part of the neurological wiring for this clearly runs in families.
I’ve recently been diagnosed with POTS although I have had the symptoms for twenty years(they have gotten a lot worse in the past couple of years). My Grandmother also has POTS but she has hypertension and I have hypotension. So I do think there is a genetic link.
Hi Tracy,
I know your post is a couple years old but I just stumbled upon your comment and I wanted to reply. I am not sure if you ever found the answer to your question about the two being related. I had Gullian-Barre when I was 13 and now my daughter is 17 and has POTS. I was searching to see if there was a link when I read your post.
Can you provide me with a list of physicians within the tri-state area of NY, NJ and Connecticut that deal and treat POTS syndrome.
The daughter of a very close member of the family has been diagnosed with this disorder this past spring at the Mayo clinic.
Many thanks for your assistance,
Frank
I have the same question as Frank Nigro: are there any POTS specialists in the NY/NJ area or should we come out to Rochester for diagnosis? We’ve been through rounds of specialists who never considered POTS. Since my daughter’s symptoms are a strong match (disabling fatigue, dizziness and stomach pain several months following mono), I’m guessing they are unfamiliar.
Louise, My daughter sees a Dr. Jeffery Moak at Childrens National Medical Center in Washington, DC. Still far for you, but thought I would pass it along.
Leanne
My son was diagnosed with POTS 2 years ago and currently the doctors are at a loss on how to treat him. Have you seen postive results from Dr. Moak? We live in Centreville, VA and could easily make the trip into DC.
Hi I am 31 and have SEVERE POTS im from the tri state area and now live in NC. We were supposed to have a place in Chapel Hill but she is’t seeing pt’s so her secretary told me the only other specialist near were the Mayo clinic in Minnesota or jacksonville FL, and the Vanderbelt in Nashville which has alot of trial studies for POTS
If you would like to seek help from Mayo Clinic,
Mayo Clinic, Jacksonville Fla., (904) 953-2272
Mayo Clinic, Rochester Minn., (507) 284-2111
Mayo Clinic, Scottsdale, Ariz., (480) 301-1735
You also can visit our Web site, http://www.mayoclinic.org/patientinfo/appointments.html
or have your doctor call our Referring Physician’s Service, http://www.mayoclinic.org/medicalprofs/
You do not need a doctor’s referral, although information about past treatment is always important.
Best regards,
Also try Shands,UF in Jacksonville
Hello, I’m 34 and I have severe POTS as well along with other health issues. I live in Richmond VA and was recently referred to Dr. Dominique Sica at VCU/MCV. He’s a Nephrologist but he studies POTS. I’ve only had 1 visit with him but compared to other doctors I’ve heard of or treated with he sounds very knowledgeable. He has a support and his nurse Donna is great. From that 1 visit he has already had a physical therapist and a dietician contact me. I’ve been fitted for compression stockings and getting in contact with Donna is so easy. If you leave a message or email her she will contact you back. The thing that I love the most is that you can actually tell that the both of them care. They are not just trying to get paid.
Elizabeth Hi my wife and I live in Australia she has been diagnosed with pots ,How are you going now? Sonya is very depressed now we have three children and she isn’t able to do a lot at the moment which is killing her she is 41 and really scared .can you share anything good with us she is on fluorine f 1mg per day and has some nausea pins and needles it’s still early days we have to beat it cheers James
Hi ames, I don’t know where you are in Aus but there is a doctor in Melbourne called Chris O’Callaghan who specialises in POTS and other autonomic disorders. Ive been in email contact as I dont live in Melbourne and too sick to travel and he says he is happy to do a skype consult with a GP referral. I’ve been waiting over a month for him to schedul the consult but I figure he is super busy and hope it will be soon. Hope things are ok, tough gig with kids as well.
We went to Children’s Hospital of Philadelphia and saw Dr. Magnusson. He specializes in chronic illness and is the one who diagnosed our daughter with POTS. She is still struggling daily with the illness. He is in your general area- we came from MT to see him. Also, check out dynainc.org for a list of POTS Dr.s. SUE
There is also a Dr. Boris at CHOP who treats POTS- that is all he treats
Dr. Julian Stewart at New York Medical College in Westchester County, north of New York City is excellent. He focuses on POTS and his publications list is extensive. My son has a very unusual presentation of POTS, and Dr. Stewart has been tremendous in exploring the mechanisms which are causing his particular problems. He was also recommended by Mayo Clinic when we moved from Minnesota to NY.
I see Dr. Michael Rozengarten at the Arrhythmia Institute (out of UPenn, but they have offices in Lawrenceville NJ and in PA as well), and he was the first to diagnose my POTS. I had endocarditis in college, which they think was the triggering factor. I have POTS symptoms in my GI tract, brain and heart, and he has connected me to people who work together to figure out how to work with all my symptoms. Because I have heart damage from the endocarditis and lung disease from multiple bouts of pneumonia, treating my POTS is at times challenging, but he is eternally patient.
Hope this helps!
Tracey is my mother. I am 14 years old, and though I am a guy I still got it. It’s rather awkward explaining that part to people. I’m going to MAYO next week to see Dr. Fischer. I just really hope things get better. It’s really bad.. I’ve missed about 4 times as many days of school than I’ve gone.
My daughter is the same way.. Unfortuately, she was misdiagnosed and now that we know what she has it has been a challenge to fix her grades. She is 17 and last year was an honor student. This year she is on 504 and IEP and has missed more than she is in. We did find that starting late and doing online classes to compensate helped her greatly. Have your mom email me if she wants advice on how to make changes.
My 16 year old is on meds but still cannot get up and go to school. Yesterday she couldn’t stand without her vision going dark until 7 pm. Her meds include nadolol (beta blocker), mitodrine (antihypotensive), and salt tabs. Any thoughts on next steps? Her 24 hour urine had very low sodium.
My sister whos is 15 years old. Has all the symptoms of POTS. The dr’s here have sent her to numerious other dr’s who send her to more dr’s and so forth. She has lost all hope. Its like climbing mount everst just tring to get her up in the morning. She has an APPT with a dr in dallas- Dr Lavine. on feb 10. I just hope this dr well help her. Drs around her in texas dont “clinicly” diganoss teenagers with POTS. Its very unfortante expecally when you have to watch your young sister, daugher, just be miserable 24/7. its heart breaking.
If any one has any words of adive or even just words of encourgment that there is light at the end of her tunnel. PLEASE email and i will pass these on to her. my email is Taylormichelle88@yahoo.com
Thank you, Taylor
I’m 15 and, as my mom likes to say, am a poster child for POTS. I got mono in 3rd grade and its been a down hill spiral since. In 5th grade I was diagnosed with Chronic Fatigue Syndrome and shortly after my parnts and I decided homeschooling would be best after missing over 50 days of school in just the first half of the year. We eventually were able to sort of work around it until I started getting symptoms of POTS. At the time, we thought it was a flare up of CFS. But it started getting worse and worse. Fast forward a year, and my mom read about POTS on the internet and I had every single symptom. We were elated! Getting a diagnosis, on the other hand, was almost as big of a struggle as the POTS and CFS itself. So after about a year and a half, we’re FINALLY gettind doctors to see me for this. Im going to New York to see Dr. Julian Stewart sometime in April, and I also have an appointment with Dr. Lavine. Im so excited to have docors realize that Im not crazy or “just a lazy teenager”. I havent been able to do anything with my friends in so long. So knowing that Im on the road to recovery is music to my ears.
I would love to talk to anyone else(close to my age,espically) who has POTS.
You can email me at
lsucrazy2006@sbcglobal.net
God bless!
You can email my daughter Jannessa.. her email is jannessa.markovich@gmail.com. Her story mirrors yours. Started at 16 for no know reason. She struggled with upteen doctors that misdiagnosed her or didn’t believe her. Until we fired the team and started over. She is in school but they have done everything they can to support her. She can share her story. It is so heartbreaking. My email is juanitamarkovich@gmail.com if your mom wants to talk.
Hi Tara,
My son Alec is 16 years old and suffering from POTS. He is home schooled and severely troubled by the lack of socialization and physical weakness. Please email him at abracer12@verizon.net. He would love the support from someone who understands the trouble he faces every day.
Pingback: Hayley’s POTS Story: Getting Answers at Mayo Clinic « Sharing Mayo Clinic
Help! My daughter is 12 and has the gene for dysautonomia. She has been very sick since Jan when she had two episodes of anaphalxis and then seems to have POTS. She has all of the symptoms including body tremmors. We live in a small town in South FL and have found no help so far. My daugher and I are beginning to think that no one believes her. Why is it so hard to get help!! Help!!!
My daughter started having symptoms when 16. Took her to age of about 35 to get diagnosed. Trying to get into see Dr. Fischer at the Mayo clinic in Jacksonville. Had a couple better years, but now back in a downspiral. I understand your anxiety with this, as so many people thought it was in her head, and was faking it. Even doctors are so unaware of this disease, but finally a few of them heard about it but haven’t a clue how to treat it. Such a bad disease. She had to use a walker for a long time, and still does on her job. God bless you and continue to search on-line. Mrs Douglas.
I also live in south Florida and was recently diagnosed with POTS at age 37 but hVe had the symptoms since I was a teenager. It has gotten a lot worse in the last couple of years. Has your daughter seen Dr. Fischer yet? I’m seeing a local cardiologist but am wondering if I should see someone who specialzes POTS as I also have a number of other chronic illnesses and medical issues as well as being a cancer and bone marrow transplant survivor. What does your daughter do for treatment?
Thanks,
Julie
I have a question like Frank’s.. is there any clinics or specialty doctors in CT, NJ area’s? I need to be seen by specialist and cannot travel all the way to the Mayo Clinic. Thank you for reading this.
Has anyone had experience with diarhea as well? My son has POTS symptoms that have been mentioned, but I haven’t heard of anyone reporting diarhea as well. This has been going on for 8 months now. I’d also like to know if anyone diagnosed with POTS had taken accutane for severe acne problems.
Thanks for your note and comments. I feel for your son!
Patients with POTS often have abdominal symptoms. Nausea and pain are more common than diarrhea, but we do see POTS patients with diarrhea. There are some overlaps with POTS and irritable bowel syndrome in some patients. That said, though, it sounds very unusual for severe diarrhea like this to simply be “due to” POTS. But, an initial diarrheal illness could be the trigger for POTS. This is similar to people with traveler’s diarrhea who go on to develop irritable bowel syndrome. I have seen POTS patients with chronic diarrhea, but it is usually mild with intermittently loose stools 1-2 times per day.
Accutane and other acne treatments do not seem to be any different in POTS patients than in other people. I don’t know of any link between the use of Accutane and the development of POTS.
Dr. Chelimsky is fantastic, and I think you are in good hands with her.
I hope things go well for your son. Phil Fischer
My daughter gets stomach issues during and after an episode.. Dr’s said it is caused by the pooling of blood away from the organs. She gets so stomach sick it makes her cry.
Accutane?? My daughter used it when about 14? Could it be a link??
My daughter was recently diagnosed with POTS by a wonderful cardiologist, Dr. Mark Townsend, in Lynchburg, Va. She is experiencing abdominal pains and nausea that she is not sure if it is caused by dairy consumption. Any thoughts? I have read that it could be caused by gluten instead. Just trying to figure it out.
Cindy, your question has been forwarded to Dr. Fischer for a possible reply.
Cindy, Here is a reply from Dr. Fischer:
I am glad your daughter is getting good care for her POTS. Indeed, lots of people with POTS have abdominal pain and nausea. Just as blood flow is compromised in POTS, so gastrointestinal flow is compromised. You are wise, though, to wonder if the abdominal symptoms are due to another treatable condition in addition to POTS. A blood test (TTG) can help in screening for the possibility of gluten sensitivity. The possibility of dairy/lactose intolerance can be explored either with a breath test or, more simply, by seeing if being off dairy for two or three days improves symptoms. I hope things go well for your daughter. –Phil Fischer
Sounds like it could be chrones which people experience diarrhea though I’m not a doctor
I’m 19 years old, and I took accutane for only a month and a half and stopped because of some of the side effects. A few months later I developed POTS syndrome, and am currently battling it.
Thanks for your interesting note. POTS can happen independently or, often, following an illness or injury. I have not personally heard of Accutane triggering POTS. Treatment of POTS, though, would not be different based on what triggered it. Phil Fischer
Yes my daughter had been on accutane. Helped clear her up. Link to pots???
Dear Brian, I always have diarhea when my POTS is bad. When I first got POTS is was daily for a few months. At that point I was bedridden with my symptoms. Also vomiting. Now, seven years later, the diarhea and nausea only happen when my POTS flares up – it goes hand in hand. Hope that helps.
I took accutane some years ago and now have POTS. Not sure if there’s a connection but I’ve wondered about it. Accutane is bad news… Wish I hadn’t taken it.
I am 32 yrs old and I was diagnosed with POTS 3 yrs ago. I have been told that I would “grow out ” of POTS. I have read on websites that kids do, but do adults? If adults do “grow out” of POTs, whats the typical range. Thank You
As a pediatrician, I am not well-placed to comment on the prognosis of adult patients. But, it is true that most adolescents with POTS do seem to fully recover. It also seems that most adults who develop POTS well into their adult years can improve with treatment but are less likely to fully recover. That makes good treatment even more important for adults since they are more dependent on their therapy than on eventually “outgrowing” the problem. Dr. Fischer
This has been a very helpful site. My 27 year old girlfriend has been suffering from POTS for the last two years. She was prescribed Mitodrin and salt pills, the Mitodrin worked well at first, then she had severe chest pains and couldn’t breath in all the way. She reduced the dosage and found that the chest pains relented. She was then prescribed fludrocortisone, that seemed to work well at first too, but then soon fell back into the POTS symptoms. I would like to check into the beta blockers to see if they help, the doctors that she has seen so far, seem to be shooting in the dark with this condition, and it leaves her confused and with no real answers.Im not sure if they understand just how bad she feels. She needs to see a specialist. They believe it was brought on by mono a few years back, she did not rest properly, working and going to college. The other challenge is her profession at the moment, she is a hair dresser and is upright standing for much of the day. We started an isometric exercise routine, as well as drinking lots of gatorade. Thank you.
Dr Fischer: I have had POTS/OI since I was 12 years old and im now 25. It has always been severe despite trying all the medication, gradually building in exercise, I seem to hit a wall & not be able to get past 10 minutes, and drinking lots of water with salt loading. I haven’t outgrown it. Is there still hope even though I’m 25?
I am sorry to hear about your ongoing troubles. While I can’t personally predict your own future, we do know that adolescents who develop POTS most often do recover, even if it takes many years for some of them. I expect that it is not too late and that ongoing perseverance will help. Small (like a minute per week) increases in the daily exercise could potentially still be very effective – in conjunction with plenty of fluid and salt intake and whatever medications your doctors have you on.
I believe our 13 year old daughter has POTS – she attends a school with severe water damage and high levels of mold. While in school, she becomes totally debilitated with nausea and fatigue and dizziness. Are there any studies yet connecting the exacerbation of POTS symptoms with mold exposure?????
Dr. Fischer: What a great question! Lots of patients have considered mold and other toxic exposures as causes for their symptoms before getting the correct POTS diagnosis. But, I don’t know of anyone who actually had POTS that was related to exposures like that. I wonder if your daughter has two separate conditions at the same time. Or, it could be that other stimulations (physical activity, social stresses, changed fluid intake) at school are exacerbating the POTS and that the mold is not the problem.
I found that school stressers trigger my daughters episodes at school. Also the getting up and sitting down then getting up.. the position of straight sitting does her in.. even in the car.
We were diagnosed last year with POTS. My boy and his best friend have been on an identical road map. They contracted it at the same time and the flare ups are within a few day of each other. They were diagnosed last March. Within three weeks of starting salt and fluids, they recovered fully. They had a very active summer. Now today they have both been down for about three weeks with no sign of improving even after being on fluddrocortisone for two weeks. Has anyone seen two people act exactly the same with POTS? Does POTS follow a pattern of recovery and reoccurence, through out the year? What is anyone’s feel for our prognosis?
For dalesdad: From my personal experience, I believe the synchronized symptoms can be attributed to the weather changes. Changes in humidity and barometric pressure always affect me. Also, being in a building with the heat on is very bad for symptoms. But mostly,heat, high humidity, fronts – such as cold fronts or storm fronts and changes in barometric pressure. I live in Florida and the approaching of storms always triggers my symptoms.
What do you do if you have been denied an appointment at Mayo? No doctors in our area treat this and say there is nothing more they can do. I am at wits end, I have not been able to work or drive for 1 year & have no life of any kind. Headaches, nausea, vomiting, palpitations, chronic fatigue & the fainting with low blood pressure have made me visit ER several times. I no longer sleep with my husband because I fell down the stairs one night on the way to the bathroom, no warning just blacked out. I am on mitodrine with a little improvement I am not fainting as often. I live in northern Illinois is there a doctor that can treat this since I can’t get an appointment at Mayo? Please this is not living.
We went through a team.. Nuero, Cardio, Endo, Oton, and Electro. She was on a monitor for 30 days and they were able to see the jumps. They had to rule out all structures. Then we started treating for autonomic conditions.
My 16yo daughter got the flu two years ago and since then has had tests that show she has no colonic motility. She had 16 in of redundant sigmoid colon removed in April. She also has frequent debilitating headaches, abdominal pain with exercise, nausea and dizziness. In a work up before her colon was removed she was found to have a completely dessicated lumbar disc at L5-S1 and degenerated discs at the 2 levels above that She was hospitalized last week due to severe nausea, dizziness and abdominal pain. She was given IV fluids after which she dramatically improved and it was suggested she may have POT’s syndrome. I would like to take her somewhere that would look at all her health issues and see if there might be a relation between them. Where might I find this kind of comprehensive care? Thank You, Kate Carroll
I should have stated in the above that we live in Chapel Hill, NC and can easily get to DC or Baltimore. Thanks, Kate
What is the proper amount of exercise for someone that is in a “POTS Trough”?
Kelli- there are physicians who are aware of POTS at OSF St. Francis Medical Center in Peoria, Illinois (both cardiologists & neurologists).
Ive known Ive had POTS now for a few years, I have both CFS and POTS (have been severely ill thou for 14yrs).
I try to treat this myself as Ive found no doctor in Sth Australia to deal with this terrible condition, so Im alone with it.
No one here seems to know about the condition. I even printed info from the mayo clinic and other places, only to have doctors ignore it as it isnt from my country so they wont try any of the meds etc for this condition.
One day when i recorded how much fluid i was drinking due to this.. I found I’d drank 28 cups in 24 hrs (which of cause then has me needing to pee heaps, a nightmare if im out).
Upping my fluid intake sometimes quite dramatically and keeping cool are the only two things Ive found I can do to help myself. Without taking great care, I get very dizzy and have gone unconscious
(one summer 3 times).
Today thou it wasnt hot, I got tired while looking in some shops, leaning against a counter awaiting to be served.. only to collapse on the ground in front of everyone
.
I used to collapse with only standing for 30 seconds, but Ive done much better past 12mths, so upset I collapsed today. In the end I couldnt do my grocery shopping as I would of gone down again and my legs were shaking and I was weak. Im scared the POTS is worsening again (and summer is coming on), I so wish I could get some meds or something with this.
If anyone knows of a doctor who deals with POTS in Sth Australia, please, please mail me about him.
Desperate
Tanya Selth
ps.. I used to drink a ton of sports drinks to help me stay hydrated (i need to almost constantly drink if on my feet)… but now Ive developed bad issues with my Insulin (Insulin resistance, specialist says I will end up diabetic).. so its now bye bye to the sports drinks I was taking to help ward off my POTS symptoms.
Having to drink just so much water is hard.. I drank so much trying to stop the dizziness and headache starting to come in the other day that I ended up vomiting water out the car window, while being driven to one of my specialist appointments.
Im mostly housebound due to my conditions.
(been severely ill since 26 yrs old and on disablity pension now due to the CFS and POTS thou I arent even 40).
I don’t know if you will read this but as much as I wish you well it was nice to hear another woman in my same situation only the wait to get disability can be up to 2 yrs and I can’t work. It’s all I can do to clean my house nd care for my kids. It hurts my heart cause my mind is young nd my body is old. I’m practicably bed ridden and if it weren’t for my daughter I’d never make it. The down side is then I feel bad she has to grow up a lil fast but she is so understanding i’m very blessed. I cry I don’t wanna be sick anymore and the Dr’s here have no idea what to do with me and so now all I can do is try the Mayo clinic charity care program and research as much as possible. The problem is how do I make money in the mean time to support my kids, I know God has a plan for me and I remain faithful to my faith but….(i;m scared)
Elizabeth, I am so sorry that you are going through this. I will pray for you. Don’t despair. I’m sending you air hugs and asking Angels to surround you.
Tanya,
Is your issue with the sports drinks the high sugar content? If so,have you tried Propel sports drink? Also there is G2 Gator aid. Both are very low or no sugar.
They both come in powdered form at the supermarket so you can just mix them with your bottled water. They are of great help to my son when the dizziness hits.
Good luck.
Roz Quirk
My daughter is 17yo and was diagnosed with POTS a year ago. She also has CVS and has lost a lot of weight. The treatment for CVS doesn’t seem to be working. Is there anyone in Virginia who treats both conditions?
Dr. Fischer: Lots of POTS patients also have chronic vomiting. Dr. Hasan Abdallah in the Washington, DC, area of Virginia cares for lots of POTS patients.
Please help! My 16 year old son was diagnosed a year ago by Dr. Abdallah. He over prescribed medications and in the end made him worse. We saw another doctor who recently said he has done all he can and his out of options. My son is severly depressed and losing hope. Any suggestions on who treats POTS in the northern VA area? We are willing to travel out of state to find the best care for him too.
My 11 year old daughter was just diagnosed with POTS two months ago. (Oct., 2010). It began with shortness of breath and dizzy, almost fainting spells, and chest pain. She has had bad cramping and joint pain. Her blood pressure is very low and she has had one episode of tachycardia that lasted for 2 days before she could actually stay upright. She is a very active girl but this is slowly beginning to bring her down. I have to force her to drink lots of fluids throughout the day and she loves salt, so that hasn’t been an issue. She is also on a high protein diet. She dances but has missed 3 practices recently. This is what she LOVES to do. I am praying that POTS does not result in her inability to dance. She loves school and so far since October has been absent 14 days. Her grades, due to confusion and forgetfulness, have gotten worse. Thankfully her school has been understanding and cooperative. The doctor said her symptoms will probably get worse before it gets better. What more can we expect? She’s so frustrated as it is.
Just a note, we live in Michigan if anyone is from the same state and has any suggestions involving doctors or clinics. She is seeing a pediatric cardiologist at the Helen DeVos Children’s Hospital now.
Hi Kelli,
I just read your post from December, 2010, regarding POTS and your daughter. I am researching POTS because I think my daughter has it too, but don’t know where to turn for a doctor who specializes in it. I also live in the Grand Rapids, MI area and wondered if you had any success with doctors that you could refer me to.
Thanks so much for any help you can give me.
Patti
My 15 yr old daughter was diagnosed in Sept ’10 with POTS. She was an active vibrant outgoing, soccer-playing whirlwind of a teenager. Since September she has missed most of her soccer games, about 9 weeks of school, and this past week, essentially fell off the cliff with anger, dispair, holing up in the basement, refusing to eat, drink and take the salt tabs recommended by her Doctor. We admitted her to the hospital for care. We are very concerned about this leading to depression as her life is no longer hers.
Are there ANY Doctors in the Colorado area that can treat her?
She has dizziness, stomach-aches, headaches, vomiting, won’t eat, drink, etc. She was an A student even though she missed 6 weeks of classes this fall semester, but she has missed all but 5-6 days of class since Jan return to school.
Please help!
What you describe is very typical of adolescents with POTS. Clearly, treatment must focus on the POTS and any depression or other situations that develop on top of the POTS. Unfortunately, I am unable to recommend any particular physician in Colorado. Phil Fischer
Wanted to share my story and see if we need to see a specialist outside of our current team. My daughter, April 2010, had what was described as complex partial seizure and her neuro diagnosed her with epilepsy.. However after 12 medications and being on 5 (3 controlled substances) she never got better. She had to be hospitalized. They found bradycardia and sinus arrhythmia and had to be admitted, they removed diagnoses and said migraine variant. But meds where bad on heart and once of 5 meds her headaches left. She was still having heart rate jumps that would last 18 hours or longer and all the classic autonomic symptoms. We found school sitting and standing positions did her in daily. That am’s were excruciating and changed her schedule to start late (thanks to her school). Her Cardio and Electophyolgist believe it is autonomic most likely POTS or Vagus. They are treating as both. She is on beta blocker, salt, sudafed, gatorade, tights, and still struggles if it comes up she has a resting heart rate from 134 to 198 and is out of it for 18 hours at a time. They (drs) have assured us she will not die. That she could injure herself. My question is what else can we do for her? She has a safety plan and a monitor watch. Can she die from this? Should she see a specialist? If so does anyone know of one in Florida? We would love to do a trial. She wants to help others.
I feel for your daughter and for you – this is a very challenging situation. But, your daughter is so complicated that I don’t think I can make specific treatment suggestions without actually evaluating her in person. I’m sorry that I am unable provide more detailed help from a distance. Dr. Fischer
I just wish I knew someone locally that handled POTS or Autonomic issues specifically. We have a great Neuro, Endo, Cardio and Electrophyologist. But they all say that they don’t have much experience with this. We are in Orlando, FL. Is there someone we can see locally?
Check out Mayo Clinic in Jacksonville, Florida-request appointment describing your symptoms:) I am currently seeing Dr. Kusumoto (sp?) at Mayo. There is also a Dr. located in Pensacola, Fl that specializes in patients with POTS. I believe his name is Dr. Thompson, but I am unsure. You can definitely Google him! If you can get a referral, the Autonomic Dysfunction Center at Vanderbilt in Nashville Tennessee specializes in POTS as well. Good luck and hope this helps…
Hi, My son was diagnosed with POTS nearly a year ago, just shy of his 12th birthday, though we think he has been symptomatic for several years prior. He also has an underlying diagnosis of leukemia, treated from ages 4.5-7.5, including many bouts of suppressed immunity system. A somewhat “unique” path I think to POTS. I have read somewhere the use of IV-IG infusions to alleviate symptoms, and was wondering if anyone knows much about this. My son received several IV-IG infusions during his treatment for leukemia, and they were quite helpful at that time. I would like to find a study somewhere that could consider him as a participant. Also wondering names of specialists in the greater Philadelphia/Wilmington DE areas. We would love to find a way for our son to find a better balance than what we are doing now (combination of meds, hydration, salt, exercise. He still crashes very easily, has missed 30+ days of middle school, and I am concerned for his future “ability” to keep with the higher school grades. Thanks in advance for any advice! Carol
POTS is fairly common, but autoimmune POTS (which seems to respond to IVIG) is very rare. Your son’s physicians could have his blood tested for anti-neuronal acetylcholinesterase receptor antibodies (sometimes as part of a “paraneoplastic panel”); labs in Rochester, Minnesota, and in Dallas, Texas, do this test. IF your son is positive, then his physicians might consider IVIG for him. Otherwise, the “usual” POTS treatments will be needed. I hope these comments help. Dr. Fischer
My daughter was just diagnosed with POTS, 2 weeks ago. It started, 6 months ago, with the bottoms of her feet being numb and progressed up to her calfs. She nows has a numbing sensation in both legs with tingling. We noticed when she sits for a period of time, like during class is when it is at its worse. When she stands up she starts to feel dizzy, lightheaded, and sometimes even feel like she might faint. Then her heart feels “funny”. Stairs seem to be a real problem too. She can no longer run in P.E. class without having to use a brown bag to control her breathing. She has been playing softball for 12 yrs, she can no longer even do this because she could not make it through conditioning.
She is currenting drinking lots of water and has increased her salt intake, but know her calfs feel very heavy. She see her dr. Monday.
Concerned MOM
My daughter has been sick since birth with many problems all related to Dysautonomia, POTS being one aspect. She has also suffered greatly from cold and cholinergic urticaria since second grade. Because she has two rare conditions the local doctors will not provide any support for her beyond meds for the urticarias. There explanation is that there is another condition that Dysautonomia and the Urticarias are secondary to and only the Mayo Clinic can provide the necessary testing. We can’t get any local testing done. We have been on Mayo’s waiting list since August 2010 and fully understand the work being done and the long wait that everyone goes through. Does anyone have any recommendations for getting better testing/support for her until we do get in with Mayo? She is currently 13 years old and no doctors in our area that work with Dysautonomia will work with children her age. We live in the South East.
I developed symptoms of POTS and hypoglycemia when I was around age 14 and the POTS symptoms finally went away when I gained weight when I was around 26. I am not sure if the weight gain had anything to do with the POTS clearing or it was just time for it to go, but it has not returned 23 years later. POTS did not officially exist as a condition back then, so it was never officially diagnosed. I also have Ehlers-Danlos Syndrome and am currently being investigated for nerve function issues (burning feet and fingers and numbness in extremities) as a possible unusual form of MS or another autoimmune disorder and/or a possible mitochondrial disorder. I survived tons of ear, sinus, and tonsillitis infections, Reyes Syndrome, and multiple cases of fungal skin disorders as a child, have intrinsic asthma, hormonal issues, gastrointestinal issues (IBS and GERD), skin fungal infections, migraines, depression, scoliosis, severe joint pain, cannot tolerate heat (I turn purple and pass out), and have anhydrosis everywhere but my head.
I believe that a subset of people with POTS have undiagnosed mitochondrial disorders.
Four of my six cousins (my mom’s sister’s kids) also have POTS (developed in adulthood). Hypoglycemia, depression, CFS, ADHD, Lupus Nephritis, and Scleroderma in cousins and their children.
My 13 year old daughter developed POTS about 9 months ago within weeks of beginning puberty. She is now being home schooled in an on line program through our local school system for several reasons (including her POTS symptoms), but there is no way she could be keeping up in school now as she is sleeping a minimum of 10 – 12 hours a day. At birth she had failure to thrive, an inability to breast feed, and GERD. She is being medicated for the GERD and is hypermobile (Ehlers-Danlos Syndrome hypermobile type), has hypoglycemia, a learning disability called nonverbal learning disability (NLD – a right brain disorder), ADHD, hormonal issues, migraines, low muscle tone, hyperhydrosis, coordination issues that have improved since she began horse back riding, and a kidney problem her pediatric nephrologist still has not figured out – when she was 12 years old she developed an intermittent hematuria (when over heated and very physically active) with cola colored urine, without protein, and now has microhematuria. She was diagnosed with POTS by her pediatrician and has seen a pediatric cardiologist who discovered mitral valve regurgitation upon doing an ultrasound of her heart – more tests coming tomorrow. She is very intelligent and is stressed out.
Has anyone with POTS been evaluated for a mitochondrial disorder? If so, what kind was it determined to be?
My 13 year old daughter was diagnosed with POTS by a cardiologist in August 2010. She was put on midodrine and for a time beta blockers which did not seem to control the symptoms. She began taking mestinon last week and since taking it, has not had a debilitating migraine. She has had side effects of nausea and vomiting which (fingers crossed) will get better with time. QUESTION: If she responds to Mestinon, does that mean she should seek further help about having an autoimmune-related POTS? There is definitely a genetic tendency for these problems in the extended family, but my primary goal is finding out what will help her get through this. Should she seek the testing mentioned in a comment above (anti-neuronal acetylcholinesterase receptor antibodies)? If so, can it be ordered by a doctor in the DC area? She is a patient of Dr. Abdallah. Thanks
Autoimmune POTS is actually pretty rare. And, whether or not she responds to Mestinon does not really change the likelihood of this being an autoimmune process. I would only consider the antibody testing IF she fails to get better with everything else – since positive antibodies might then prompt consideration of IVIG treatment. Until then, I would not think about IVIG. Two labs, to my knowledge, do the antibody testing – one here at Mayo and one in Texas; I think both accept samples from around the country. For now, I’d suggest you continue with Dr. Abdallah and keep up the good work! Dr. Fischer
My sister was just recently diagnosed with POTS and is having a very hard time coping. She is 32 years old and has a 2 and a 4 year old. She does not want to be alone and is beginning to get anxiety. We live in south Louisiana and she is seeing a cardiologist that diagnosed her and seems to be very knowledgeable, but I was wondering if you had a recommendation for a doctor that specializes in disorders of the autonomic nervous system. We’re hoping that there is someone out there who can offer some kind of treatment that will allow her to get her life back and to be able to care for her children. Thank you.
I am in the same boat…I was diagnosed when I was 30 and I take 25 mg of Atenolol. The medicine works like a charm and am able to care for my family. I still have a few episodes now and again but am learning how to avoid the triggers.
What are your triggers? I am 36 years old and realized I had POTS when I got pregnant 4.5 years ago. I am still trying to figure out my trigger and if I should take medication. I think exercising too hard is one of my triggers. Has anyone been told they might have an adrenal gland deficiency?
It seems that the IV fluids, have an immediate and positive effect on patients with POTS. It may be useful to incorporate this treatment as a standard treatment, and educate doctors to prescribe such treatments at their local infusion centre. Please incorporate the fluid therapy in your future papers.
Thanks for your interesting comment. It is very true that POTS patients feel temporarily better with intravenous salt water infusions. But, we try to accomplish the same goal more safely by encouraging plenty of oral fluid and salt intake. In fact, I am aware of some serious complications of intravenous line use that had been initiated elsewhere for repeated salt infusions. So, while I agree that there is a temporary benefit to salt infusions in patients with POTS, the risk of doing this in more than emergent settings seems greater than the short-term benefit. Thanks, though, for your comment and thought. Phil Fischer
Dear Dr. Fischer,
Thank you for your video!!!!My cousin had mono in seventh grade and has not been the same since. She is my very best friend, and she has changed over the past three years. She has been sick constantly. After she had mono, she had terrible headaches and nausea and could not go to school. She makes straight A’s in everything and always takes advanced classes. She had gall bladder surgery and other tests to help the doctors figure out what’s wrong with her. The doctors just act like she’s crazy and say she needs to go to a psychiatrist. I know she’s really sick. She wouldn’t act this way if she weren’t really sick. She is nauseated every day and she keeps telling me that she’s scared she’ll have another bad headache, so she takes the medicines the doctors give her, but the medicines have made her so sick that she doesn’t write me back on Facebook anymore. I’m so worried about her. I watched your video and told her we needede to check her heart rate. We did a heart rate test. When she is lying down, her heart rate is 90. When she stands up her heart rate is 120. She is taking propanolol and something else, I can’t remember. No one is going to listen to me because I’m a teenager, but we went through the checklist of symptoms, and she has them all. Can you please tell us how we can get adults to listen to us? Thank you.
Jessica, please see the email Dr. Fischer sent you.
My 13 yr old daughter was just diagnosed with POTS, after 2.5 months of oh its just a virus, all blood work and testing coming back negative. Finally after bringing her to my Pediatrition and telling him that she cant walk at home she crawls everywhere, crying in pain. He had a conference call with the specialist we are seeing and after he did a type of a cardiac test and her levels jumped 57 points in less than 7 minutes he confirmed his thoughts. I would love to hear from a parent to just talk with we live in Syracuse Ny. We have a Cardiac appointment in 2 wks. Lizzie is actually a twin and her twin has Down Syndrome fortunatly her twins Cardiologist is getting her in quickly to continue some more Cardiac testing.
thank you hope to hear
Candace
I think my 14 year old daughter has POTS. Is there a doctor in Dallas,TX that you can reccommend?
Thanks,
Barbara Baselice
I want to share my son’s story because I think that the trouble he had getting a diagnosis is all too common. During the summer when he turned 11, he had a number of seemingly temporary problems (two bouts of heat exhaustion and an insect bite that had to be treated). He played baseball every opportunity he could, and suddenly, he couldn’t take the heat, even on relatively cool days. His physician thought it was just effects of heat exhaustion. The problems got worse the next year, and his activity level was cut roughly in half. His doctor sent him to an endocrinologist and a cardiologist, but both said that nothing was wrong. His regular physician said that he was probably just feeling pressure over baseball. Shortly after that, my son had two scary episodes with chest pain. I almost had to beg the doctor, but he finally referred him to Mayo Clinic where he saw Dr. Porter (who, I believe, is now retired).
My son had an autonomic function test (sweat test and tilt table) at Mayo, and Dr. Porter said that the results were dramatic. He had POTS. He was put on Nadolol and told to start exercising moderately. A month later, we moved from Minnesota to New York. A month after that, my son was laying in bed and started to have double heart beats which I could feel with my hand also. By the time we got to the ER, it was back to normal. We were referred to a pediatric cardiologist in Albany who said that he didn’t fully understand POTS (I really appreciate when a professional can admit that they are not an expert in something so that you can move on to another person). We called Mayo, and they gave us the name of Dr. Julian Stewart at New York Medical College.
My son saw Dr. Stewart in March 2011 and had a much more thorough autonomic test. This time, they had an ultrasound device on his temple which revealed a tremendous loss of cerebral blood flow when the tilt table was raised. The test had to be aborted, and Dr. Stewart said that this result was very unusual.
My son has developed additional symptoms with his feet. If he stands, his feet get bright red and hot. Occasionally, his toes get red, while the rest of his feet get purple, and orangeish spots appear on the affected areas. An ultrasound tech who witnessed this said that she didn’t even know how to describe it in a report.
My son has been tested for Lyme, the anticholinergic antibodies, catecholamines while lying down and standing, and a bunch of other stuff. So far, we don’t know exactly why this is happening in this way. I have to say that Dr. Stewart has been wonderful and has gone out of his way to seek additional testing/theories for a patient who is several hundred miles away.
The nadolol doesn’t seem to be doing much. Midodrine was completely ineffective at relieving the problems with his legs. Next, Sudafed has been suggested because there is some indication that there is an anomalous catecholamine surge upon standing, with Mestinon waiting on deck.
I have read a lot of comments about depression and losing hope with POTS. I have worried about this as well. When active kids can’t be active any longer, it hurts. Luckily, my son took up guitar and is passionate about it. That gives him something that he can do without being active, and he says that when he is better, he wants to get back into baseball. I hope that his attitude stays positive.
One of the most important things that we have read anywhere about POTS was in the Mayo Clinic booklet: “It’s not in your head.” It is so uplifting when a patient who has been told by numerous doctors that he/she is imagining their condition is finally diagnosed. I hope that everyone who posts here gets great care and stays positive about their future without POTS.
I was diagnosed with POTS yesterday after years and years of symptoms by a doctor in Atlanta with very little experience actually treating the syndrome (he did the poor man’s tilt test as well as a holter monitor) . Is there any doctor in Ga who specialized in Autonomic disorders? If not and I travel to mayo clinic how would my treatment be regulated? Any help would be appreciated. Unfortunately my symptoms have gotten much worse over the past month and are now affecting my breathing so I would like to get in to someone ASAP. Thank you!!!
We are checking on an answer to your question and should be able to get back to you within a few days.
I am glad to hear that you now have gotten a helpful diagnosis and look forward, with you, to improved health. Personally, I do not know POTS specialists in Georgia. Appointments at Mayo Clinic for adolescents with POTS may be arranged by calling 507-538-4206, but there is currently a long delay for new appointments. Appointments for adults with POTS can be arranged by calling 507-284-3994. Typically, the Mayo team would identify/confirm all significant diagnoses, come up with a treatment plan, and communicate with a home physician who can work with you over time – with follow-up appointments back in Minnesota only when really needed. I hope things go well for you. Dr. Fisher
Kristy,
Hello. I live in the Atlanta and I was wondering how you are doing and if you were able to find a doctor that specialized in POTS? I’ve been having a terrible time myself. No one understands what I’m going through. Would love to hear any treatment or update. I hope all is well.
Tiffany
My 9 year old daughter was a healthy, normal 9 year old girl who played soccer, did Girl Scouts, got A’s & B’s and loved school. She had the flu with a low grade fever and three days of vomiting in February of 2011 after going through a growth spurt in which she grew from a girls size 12 to a women’s med in clothes in about three months. After that flu she reports constant dizziness with 5-30 minute times where she says she gets “super dizzy”. She says that some days are really bad with lots of dizzy spells and other days are not as bad with just the constant dizziness all day long but no super bad long spells. She has had and MRI, hearing tests, CT Scan, vestibular testing and neurogical testing- all was normal. She does have orthstatic tachycardia but the cardiologist did not think it could be POTS because she has not had any GI issues or pooling of blood in extremities. She is very tired all the time. She used to go to school and do an activity every night of the week, now she can’t make it through a school day. She gets very over-heated when doing any kind of physical activity besides swimming and her face turns bright red after just a 1/4 mile hike in the woods. Doctors are insisting it must be anxiety since we have not found any other medication explanations but she did not have any anxiety until the dizziness had lasted for 5 months and now is worried that doctors don’t believe her and don’t know how to fix her. Could this be POTS?
We are referring your question for an answer and will get back to you soon.
Dr. Fischer says: This does indeed sound like it could be POTS, even though she is younger than most POTS patients. She has the post-infectious timing and the association with the beginning of puberty/growth. She has the orthostatic tachycardia (though you didn’t say how much) with dizziness, fatigue, and unusual sweating. Many POTS patients do have nausea or other GI symptoms, but not all do. Yes, anxiety can present in similar ways, and anxiety and POTS often overlap; but this sounds like it could be more than “just” anxiety. Ongoing careful evaluation would be appropriate.
Thank you for taking the time to respond! It is very much appreciated. After working with parents as an Early Intervention clinician I know that parents know thier children best and have to advocate for their health issues.
My daughter, Kasey, is 16 years old. We attended the Pediatric Pain Rehab Clinic at Mayo in January & February 2011. Since then, Kasey has continued to struggle with her diagnosis of Fibromyalgia. She has developed new symptoms within the past few months that I believe are POTS symptoms. She has fainting spells upon standing up, episodes of heart racing that exacerbate the fibromyalgia pain, nausea, and chest pain/tightness. I understand that many symptoms of Fibro & POTS overlap, but I am concerned as to whether or not we should pursue getting a POTS diagnosis. At Mayo, we were told not to pursue further diagnoses, but the heart issues deeply worry me. We live in Colorao Springs, CO. Any thoughts or doctor recommendations?
Thank you for your post. Since your daughter unfortunately continues with symptoms since her visit earlier this year, we recommend that you contact either her physician at Mayo Clinic or call the Appointment Office at 507-538-3270 to request a consultation to evaluate for POTS syndrome. We will also inquire as to whether Dr. Fischer can recommend a specialist in Colorado.
Hello, Mrs. Macomber. Dr. Fischer provides the following thoughts on Kasey’s condition:
“We do not have a POTS-specific physician to recommend in Colorado. And, I think it is most important for Kasey to vigorously pursue all the treatment suggested by the Pain Clinic. After that is all in line for a few months and IF the dizziness is still persisting, then we might suggest further POTS evaluation. For now, though, I think all the symptoms will improve with rigorous attention to the Pain Clinic’s treatment program. I hope these comments help.”
Please contact us again if you have any further questions and/or thoughts.
Hi, my 14 yr old son has been suffering from POTS for a year now and his symptoms are not well controlled with Midodrine or Mestonine. I would like to try a beta blocker, per Dr. Fischer’s podcast. What beta blockers are effective in treating POTS? Thanks.
Your question has been sent to Dr. Fischer.
Fom Dr. Fischer: Great question! Of course, an individual patient should have a good doctor providing customized care; from a distance, I can’t say for sure just what beta blocker is most likely to help a specific patient. But, metoprolol and atenolol and propranolol are the most commonly used beta blockers (for patients with POTS). Anecdotally, propranolol seems a bit more likely to be associated with increased fatigue, so I personally most often choose metoprolol as my first line beta blocker treatment. At the same time, medications are just one part of the overall POTS treatment, and it is still important to encourage daily aerobic exercise along with increased fluid and salt intake.
My heart goes out to all of you! My 15 year old daughter has been to over 25+ Doctors in the last few years and was finally diagnosed with POTS this year. In addition to Hashimoto’s, CFS, Fibromyalgia, Pain Amplification Syndrome, Migraines… We see a Diagnostic Doctor in Cin, OH which I love, but I would love to know if there are any Doctors that know about POTS in the Louisville, KY area? Please advise and thank you.
We’re checking into an answer to your question.
With POTS, there is altered blood flow to the head, and visual problems are common. These are often positional dizziness and headaches with blurred vision. But, the autonomic nervous system also controls the dilation/opening of the pupils; people with autonomic dysfunction can have big pupils and be bothered by bright lights.
Cincinnati has great care for complicated adolescents, and their diagnostic clinic is exemplary. The University of Louisville also has great physicians, but I do not personally know of one who deals specially with POTS. Dr. Fischer
Thank you very much Dr Fischer. All of your info that you provide on the computer is very helpful. I just wish there were more Doctors out there who knew about autonomic dysfunction.
My daughter is also experiencing vision problems, dialated pupils a lot lately and it blurs her vision…is there anything we can do about this?
It appears that POTS SHOULD be relatively easy to diagnose & yet we went through a number of misdiagnoses over four months to include: “it’s all in your head”, inflammatory bowel disease (Crohn’s), appendicitis (yes, my 12 year-old daughter went through surgery to have what turned out to be a healthy appendix removed). Repeated blood tests, stool tests, upper & lower scopes, x-rays, CT-scans, ultrasounds, etc. You name it, she had it. About 9 weeks into her illness, our pediatric GI did note that her heart rate increased by 43 bpm from laying to standing, but she ended up pursuing what turned out to be a false test result showing a very high calprotectin level(measures degree of inflammation in the intestinal mucousal) which then led to the more invasive testing. The appendix was removed when she had sharp lower right pains & elevated WBC which we now believe was a kidney stone/infection resulting from some of the supplements she was taking when we thought she had IBD. My reason for going into all this detail is: why don’t doctors know about the relatively high incidence of POTS in teenagers? We saw at least 15 doctors before a doctor at Stanford mentioned the word POTS. Even though I had done a lot of research online, I had not come across POTS. I believe my daughter got POTS after a flu virus in June. Her main symptom was constant nausea that got worse when she stood up as well as a bad acid taste in her mouth. So I was looking up those sypmtoms online & I never found anything about POTS. We live in the Sacramento area & we have an appointment with a second peds cardiologist next week. The first cardiologist we saw said he wasn’t too familiar with POTS so he referred us to the doctor we will see next week. I’m hoping she will be able to help us with treatment options. My daughter is doing better, but she is far from 100% and still deals with constant nausea.I have requested an appt with Mayo Clinic as well but they have a 15-18 month wait. My question is: What can we do to better educate the medical profession in regards to POTS in teenagers? I would like to help. If I can prevent another mom & child from going through what my daughter & I went through this summer, I will do it, but I need some ideas as to the best way to approach this problem. I keep going back to the first hospital stay when they came back with a diagnosis of: it’s all in her head. If they would’ve determined that she had POTS, we would’ve been spared a lot of pain & agony. I know that there are several hospitals in addition to Mayo Clinic that know a lot about POTS in teenagers, but that is not enough. We need to get the word out. Any ideas Mayo Clinic and others?
We agree! POTS was first recognized in teenagers in 1999, and it is true that the condition is under-recognized. Sadly, your daughter’s story of “delayed” diagnosis is not unusual. With you, we want to help with education about this condition. Other people should be able to handle this, and having more aware physicians would help cut down our long waiting list for appointments. What are we doing? The YouTube material has reached over 37,000 people so far (or maybe you and my mother each 18,500 times!). The popular press has picked up the topic a bit (ABC News, New York Times). Patients and parents like you are telling friends. We’ve had educational conferences for physicians at local and regional and national meetings, and we’ve provided some medical journal articles. All that sounds like a lot, but, as you know, it is merely scratching at the surface of the need. We’ve been brainstorming about further medical articles (the research is already continuing, but review/educational articles might be spread more widely through the professional community) as well as further social media efforts. The families of some patients have spontaneously sent money to help with adolescent POTS research, and the family of another patient paid a teaching hospital in their area to organize a morning of POTS education. The process is exciting, but the remaining opportunity is huge. I offer these comments mostly as a means of expressing my appreciation for your passion to help and as further fuel to your development of other good ideas. Thanks! Dr. Fischer
Dean Dr. Fischer, Thank you so much for your prompt reply. I am very excited about the ideas in your message. One thing that I plan to do is write a summary to each of the doctors who treated my daughter, & there were so many, so that they at least understand about POTS and I will also ask them if they have ideas about educating the medical community in our area. I would think that the insurance industry would have a vested interest in making sure that the medical profession is able to diagnose POTS. In my daughter’s case, the amount of money that was spent on ER visits, specialists, CT scans, ultrasounds, etc., is mind-boggling.
I cannot thank Mayo Clinic enough for the valuable information that I have found online. I have used your information to help school officials and others understand more about my daughter’s illness. Here’s to getting the word out!
Dr Fischer, Are there any medications that you would recommend for a 12 year-old diagnosed with POTS who’s primary symptom is constant nausea which gets worse after eating? Also, would it make sense for me to purchase a Pulse Oximeter? Costco has one for $33. I don’t know if there’s any benefit to periodically checking my daugher’s heart rate. She’s only been checked for 5 minutes by the doctor & one time, her heart rate went up 43 bpm laying to standing after 2 minues & another time it went up 27 bpm. I appreciate any advice you can offer from afar since we’re in CA.
My perky, once-ballet mad daughter started with POTS in June 2010 after a nasty viral infection, which announced itself with stomach pains and medical tests to see if she had appendicitis. She was 13 then, 14.5 now, and was in the process of settling into a busy new high school in Melbourne, Australia.
Although puberty started early for her at 11.5, she had been in the middle of a growth spurt that
alarmed her as she looked in the mirrors at her dance studio and saw her skinny figure transform into a young woman’s shape.
Earlier last year we had been worried about a possible eating disorder (she had always had a small appetite). Then, on the school bus coming back from camp after a week away (when her viral illness developed), she fainted – four times – and ended up in the emergency department of a country hospital. She was hours away from home – how frightening for her! In total she has fainted 35 times, but this “headline” symptom now seems to have stopped. We are left with intermittent strong headaches and migraines, “fogginess”, dizzy periods and nausea. She is on Florinef, drinks a lot more water and has been seeing an exercise physiologist to help with the fatigue. She stopped Midodrine after a bout of strong headaches lasting days, and Sandomigran after she thought it was making her feel more nauseas and tired. She is trying to exercise regularly at the gym, though it can bring her down the next day, and I am now wondering if she needs to try a beta-blocker (or if the exercise alone might help her recover).
POTS has changed her life (and mine). She has described this time as like being on a roller-coaster; I often feel like we are stuck in a bog.
We have also suffered from the cynicism of some doctors, unfamiliar with this condition, who thought her problem was psychological/emotional. But she has had a good medical team around her, led by a lovely senior paediatrician at the Royal Children’s Hospital. It does seem more information is needed about the effect of stress on POTS, and the extent to which the constant worry (of not keeping up with schoolwork and friends, for instance) feeds back into the symptoms. She has missed a greal deal of school and has been on a reduced timetable to help with the need for pacing. Next year she is changing school to see if a smaller place with a greater focus on the performing arts will help her.
But the saddest aspect has been the virtual loss of her dance. She is hanging on to a half-hour private lesson each week, when she feels well, with a new teacher who is understanding (although her bpm reached over 190 in class recently).
At the same time she is mad with the dance world, perhaps the world in general.
This is the first time I have ever contributed to a blog. There has been a lot to say.
I could really use some guidance or answers on this annoyingly frustrating condition. I am a 28 year old mother of three and a business woman working for the government as well. I was diagnosed three weeks ago with POTS after about 4 months of feeling ill and many other misdiagnosis. I am on bedrest now because I am passing out a few times a week, and injuring myself while falling. I go into convulsions, and have had my heart rate over 230 many times. I go into convulsions, headaches, naseau, intestinal issues. I live in a small town in Eastern Oregon and know of no specialists in my side of the country and really need one. My cardiologists in Boise, ID are great but not extremely knowledgeable of my condition. I am on Midodrine, Flutocortisone, salt tablets, and Cymbalta but so far they are not helping. I can’t keep food down which is not helpihg and has caused me weight loss of 25 pounds in 2 months while not trying and I didn’t have the weight to lose to start with, down to 120 now. I have to be able to work or take care of my children though. Yesterday I had to be taken my ambulance for the 3rd time for my injuries from falling this month, and my 4 year old son is the one who had to call 911 and get me help cause I had hit my head going down and knocked unconscious, broke my nose and stabbed my leg/bottom with a knife going down as I was in the kitchen. It was a horrific bloody scene for him to see and I just can’t live this way. Any help would be greatly appreciated.
rubertifamily2005@hotmail.com
Tyra
We have received your comment and will be checking with the doctor.
Wow! Your story is sad and very concerning, Tyra. I’d like to be able to help, but your situation is fairly complicated and severe, and it would be necessary for a physician to see you to guide specific treatment. And, it sounds like you have physicians who are at least comfortable adjusting medications. Of course, being in bed doesn’t help recovery. Hopefully you’ll be up and about some soon since a body with POTS needs activity to keep the recovery process going.
Hang in there! Phil Fischer
HI, My daughter has all the symptoms of POTS, the cardiologist in Reno agreed that her heart rate changes and she most likely has POTS. The doctor said that POTS is not the cause of her fatigue and nasuea because it is constant and not directly related to her standing. Is there a publication I can refer her or do you know of another Doctor in the Reno area that treats POTS patients.
We have referred your question to the specialist for a reply.
Thanks for the good question. It is true that POTS patients usually feel dizziness with standing. But, it is completely true that the fatigue and nausea are not only positional.
Sorry that I don’t know of a specific POTS-experienced physician near Reno. Phil Fischer
Two nights ago I got out of bed quickly to put my daughter back to bed. Often when I jump out of bed, especially if startled awake, about 10-30 sec. later my heart feels like it will jump out of my chest and I have nausea. I usually sit down and within five minutes it passes. Two nights ago I decided to just lean against the wall and wait for it to pass. Within 5 sec. I fainted. I heard my head smack the wood floor, and still have a headache. I know I was confused with what happened and I had difficulty walking back to bed. I don’t really have a problem getting up in the morning but feel like I could lay in bed all day. I often have nausea. Occasional chest pain, attributed to heartburn even if no obvious trigger, intense exercise causes same heart-rate jump during the first five minutes, occasional dizziness when standing from sitting, heat intolerance (have passed out once from getting too hot and several times have gotten sick fom being too hot). The list can continue, but maybe none of it is relevant. I am 35. Does any of this sound like POTS, like something else, or like a list of unconnected isues?
We have referred your question for an answer.
These do sound like symptoms similar to what people have with POTS, but this could also be more common/normal vaso-vagal reactions that can be managed with careful/slow rising and increased fluid intake. It will be important for you to discuss all this with a physician who can personally evaluate you. Phil Fischer
Dr. Fischer,
Our 18 year old daughter was diagnosed today with Pots at the Cleveland Clinic. Her symptoms are certaintly not as debilitating as most posted here, but she has a tendency to faint when hearing or seeing something disturbing to her, and she gets a bit lightheaded upon rising. After she sustained a mild concussion from a fainting incident, a workup was recommended. What is very interesting is that she is a top collegiate athlete with some performance issues and we have a few questions if Pots is the cause and if there is anything further she can do.
-First she had a significant tilt table response…a heart rate increase of over 50 beats per minute…but since she is an elite runner, her HR started low—at 47, so the increase was to 99/100. Her BP did not drop.
-She does have large pupils and complaints of trouble with her vision at times…something I just read on this site. A vision test 6 months ago was normal. She still complains of some blurry vision and headaches if she strains, so maybe Pots is to blame??
-***Top Question:She is a member of one of the very top Div 1 distance running programs in the nation. She had some difficulty with performance consistency in high school and now in college as well, which can be very difficult for a scholarship athlete looking to support the team. In HS she could set a state record or run a top 5 nationally ranked time for the season on one weekend, and a week or so later struggle significantly in a race. She has a very even keeled personality and her HS coach didnt know what the problem could be. Now in college they also do not know what to think. She began the season with a huge performance but with harder training she grew weaker.
**Could Pots cause pooling of blood/ lactic acid that could cause recovery difficulties in runners?? She gets heavy legs. Often with rest from intense work she can bounce back and have one great race, but she can rarely run 2 great races back to back. She can’t seem to predict her performance and it is very challenging at her level.
She has just been prescribed salt tablets, and is also going to try compression socks especially during and after intense running workouts or races. We are hoping this might help with leg recovery so she can perform well more than just a few times a season! The doctor did not feel Beta blockers were indicated due to her low resting HR and how conditioned she is. If you have any other suggestions please let us know, or if you think a visit to the Mayo clinic could be beneficial we would definitely schedule an appointment!! Thank you!!
Your comments has been sent to Dr. Fischer.
Thanks for sharing your daughter’s story, and I commend her on her running success in spite of her health challenges.
While I can’t make definitive comments without seeing her, I will provide some input that you can put in appropriate context as you work with physicians who have actually seen her. Yes, it does sound like she has a tendency towards POTS. Her running and fitness is probably why she is not sicker than she is.
She should definitely drink LOTS of fluids – enough so her urine usually looks clear like water rather than yellow. I agree with aggressively increasing salt intake. Taking salt pills is okay. Otherwise, I might have said that once she is taking as much as her taste buds can tolerate, her doctors might want to check the sodium content in 24 hours worth of her urine to make sure it is at least 170 mmol/Liter; otherwise, then they would even want to consider adding salt pills. Compression stockings (at least 15-30 mm Hg pressure rating) are also a good idea.
Your daughter should keep moving after exercise. Suddenly stopping might make her blood pool even more to make her very dizzy right at the end of a race. The “victory lap” could help prevent her blood from pooling too much.
Sleep is vital. Getting behind on sleep can contribute to bad days/weeks.
I wonder if they checked your daughter’s ferritin level (a marker of iron status). If it is less than 20, iron supplementation might help. About half of our POTS patients also turn out to be iron deficient, and iron supplementation can help.
I agree that your daughter should do better enough with these non-medication measures. But, if she is not doing well enough, we could consider medications, perhaps midodrine instead of a beta blocker.
POTS can be VERY frustrating. Your daughter’s ups and downs with running performance are, it seems, completely due to her physical problem. But, it might help to see a psychologist who is skilled with helping young adults cope with physical challenges – either a sports psychologist or a psychologist who helps kids with stuff like cancer. She can use her good mind to help keep her performance up even when her body is pulling her down.
Feel free to let me know if we can help more. Phil Fischer
Thank you so much Dr. Fischer!! It has been a few weeks now and she has been wearing the compression socks and salting her foods. She has been on iron from a low ferritin years ago and has been teasing fine I believe. Should we ask the medical staff at the college to check her sodium levels? She won’t be home for many months. She opened her indoor track season with great races on Friday. But that is typical. The true test is coming up when the training and racing becomes more intense. Can you recommend other things to do following races or hard workouts? Would electric stim and/or massage in the training room be good? They ICE bath after some workouts..is that good for people with POTS? Would limiting the number of races per day help? I also read heat can make the blood pool more, so maybe she should look to keep out of the heat as much as possible on weeks of races? Any ideas to try would be greatly appreciated!! This has been very informative!! Thanks,
Jeanne
My life changed completely when I unexplainably stopped being able to do so many little things that were normal to me… it just got worse and worse, to the point where I had to stop working and now have a very “on pause” kind of life. I was 30 and visited every possible doctor, trying to get some diagnose and treatment.
I am 32 now and was finally diagnosed with POTs (thanks to a tilt test) at home, in Argentina. Still doctors seen to be unable to help and do not understand how I feel, saying things like “POTs is nothing, you shouldn´t bee feeling that bad, tired, dizzy, or airheaded because of this, go back to your normal life, it is all in your head” (sure, as if I have chosen not to feel right)… I try to remain positive, but it is very frightening when you can´t find a way out of feeling bad almost every day. They gave me INDERAL (beta blocker) but I got weaker and it didn´t help at all, so they´ve stopped it and I am under no treatment at all.
I guess I am lucky though, since thanks to internet I was able to do some research and started to understand a bit more how POTs works. I am going to Mayo Clinic on february 13th and, Dr Phil, if you are reading this, even if I´m not an adolescent, I would LOVE to meet you there… I am both afraid and hopeful to go to Mayo, wishing to find my way back to my life.
I´ve been taking lots and lots of water, salt and tried exercising but stopped because all my symptoms worsen (yea, ambulance involved). Also tried acupuncture for 8 months but found no improvement at all.
I was wondering, do you think my life will go back to normal? Is this even possible or do adults with POTs always have to live with “good” and “bad” days? I´ve read about adolescent, but found very little info on adults… what are my chances of a complete recovery?
Thanks a lot. It is the first time in my life I´ve ever written on a blog, I found it very useful. And sorry for my spelling mistakes (I have to improve my english, I know!)
Your comment has been forwarded to Dr. Fischer.
Thanks for your note, and I am glad to hear that understanding POTS has at least helped some as you deal with this difficult problem.
There is increasing evidence that adults with POTS can indeed improve with good treatment, even if complete cure is not guaranteed.
People vary in the way their bodies metabolize and use beta blockers. So, sometimes when one beta blocker hasn’t helped, a different one will.
I hope things go well for you during your visit to Mayo. Unfortunately, I’ll be teaching in Africa at that time and won’t get to meet you.
Phil Fischer
Dr Fischer. Thank you so much for your prompt response. Apparently you are fully booked in the Clinic until march. I would wait for you if you think I could see you (even though I´m a bit old for you, I know). You can´t imagine how much hope I felt while reading about all the people you´ve treated thanking you for having a “normal life” again. Hope is almost all I´ve got these days.
I think I need to have your approval and I know it is a lot to ask for, but let me know if you are available.
Thank you so much!
Just have been recommended to Dr Benarroch, who treats adults with POTs, so wish me luck! I´ll be at least 15 days in Rochester, so let me know if you are there!
Thank you again!
Dr. Fischer or Mayo Representative:
I am a 24yo Female in Phoenix arizona. I was diagnosed with POTS 2 years ago but have been experiencing symptoms for 7 years now. I currently take midodrine, fludrocortisone, nadolol, wear medium thigh high compression stockings, attempt to exercise (primarily on a recumbent bicycle)daily, drink lots of poweraide 0 and water, and supplement my salt intake with chicken broth. I have been from specialist to specialist. I have a decent team of doctors right now that are eager to learn more about POTS but are not POTS specialists. I was referred to the Mayo Clinic by neurologist in agreement with my electrophysiologist and primary. I work for Banner Healthcare therefore Banner insurance will not cover the majority of the cost because its out of network. My POTS has gone from debilitating to manageble with ALOT of trial and error with my current treatments but I still feel crumy all the time, lots of vomiting, embarrassing tremors, dizziness, ect. but no more fainting. Is this going to get much better or is this as good as it gets? Will Mayo Clinic do for me what all of these other doctors havent been able to? Will it be worth the thousands of dollars out of pocket or should I stay on the path that I am on currently?
We have referred your question to Dr. Fischer.
Thanks for sharing your story. I feel for you but am pleased to hear that you have moved beyond debilitation to some level of function – even though it is not yet a great level of function.
Obviously, I can’t predict the future. So, I don’t know how soon and how much improvement you will find. And, I don’t know how “worth it” a visit to Mayo would be. But, I think there are two issues involved here. One is that you need the best medical care possible. It sounds like you have been getting very reasonable treatment. But, there are often adjustments in care that can be made to further improve function. Second, many patients find great benefit in knowing that they are “doing everything.” If you have incomplete confidence in the work your current doctors are doing (even though it sounds very reasonable to me), then you might find some value in seeing true specialists who can give you the confidence that you are doing everything possible to maximize your recovery.
I hope these comments help. Phil Fischer
Hello,
My 16 year old son has POTS and although he is able to function most of the time, he still feels crappy virtually every day – primarily headaches, stomach aches and lots of fatigue. Some days he comes home from school and pretty much “crashes” until 8 or 9 at night, then gets up just long enough to eat something and go back to bed. It is extremely disconcerting to see him go through this.
His doctor is really great in general, but has never dealt with POTS before and thinks it would be good for him to see a specialist. We would really like to get him in to see someone with expertise and experience in this arena and we live just a couple hours from the Mayo in Scottsdale (we are in Prescott, AZ). Would you be able to refer us to a specific doctor here who could be of help? Thank you so much.
Hello, Brett, and thank you for your comments. Unfortunately, the Mayo Clinic in Arizona does not have any pediatric specialists although we can ask Dr. Fischer if he could recommend a physician in the Phoenix area.
Hi,
I have had pots like symptoms when I was 7months pregnant. My son is 18mths old and the symptoms are worse. I live km Orlando and cannot find a doctor to help me. I ended up at Jackson memorial hospital in Miami. Had lots symptoms and stroke like symptoms. Was diagnosed with POTS and complicated migrsknes(they r 70% sure of this). A doc told me he has seen 30 patients in his life with both these problems. I cannot find a doctor to help me in Orlando. Also who can I see at Mayo clinic. I am so frustrated. Cannot work or care for my child. Help.
We have forwarded your question to one of our POTS experts.
Thanks for your note. I am sorry to hear about your difficulties.
POTS and migraines often do go together, and your doctor is correct that beta blockers can be useful for both problems. It sounds like you are getting reasonable care.
The group at Vanderbilt in Tennessee is excellent with adult POTS, and they are a bit closer to you than Mayo Rochester.
I feel for you and hope things get worked out.
Phil Fischer
I forgot to say that I am 33yrs old. Can u recommend someone who can confirm that I have pots and who can fresh me. I was given propanolol and was told to experiment with the dosage. I switched to 20mg on mornings(just started this morning) and 10mg at night. The doctor wants to use this to treat both pots and complicated migraines.
HiDr Fischer and everyone. I have had these symtoms for 32 years and thank goodness I found this site. Doctors do not understand and give the normal tests and say I test out healthy. I went to an endocrinologist a long time ago and remember I had low aldosterone levels. When I was young my blood pressure dropped on standing and on waking in the morning but nowthe last couple of years it is all over the place. High and low. I am 60 and this condition has made my life miserable. I love tennis and golf and used to drag myself to a match crying and if it was a really bad episode I would usually get injured while playing. When I was 28 I stopped teaching school and never taught full time again.I loved teaching. I have all the symtoms and the nausea and diarrhea. My husband is wonderful and I showed him the video and he said that is exactly what you have. But I know when I tell doctors about POTS they will not take it seriously. Just to let everyone know this can last a lifetime. I will let my doctor know about this article and try to get the determination to find a doctor that will help me. Thanks everyone for all your stories and hope for everyones sake that more advances will be made on treating this condition.Dr Fischer do you have trouble getting other doctors to believe POTS is real?
Thanks for sharing your story with us. As a pediatrician, I wouldn’t presume to know how to treat you at this point! But, your years of experience with POTS can be helpful to many people.
With ongoing research and professional education and even lay press about POTS, the “non-believers” are becoming rare, but some are still underinformed. Thanks for sharing your comments! Phil Fischer
I am 28 years old and have recently been diagnosed with pots..I was told by the dr in dallas that i needed to see a genetic dr for hypermobile joint and another dr for blood pooling in my legs and pelvic area then another dr for biofeedback..I feel like im just hitting a dead end. traveled 6 hours to find out that i did have this after already being told this.. to have to find several more doctors…Most genitic drs are sayin they only see children and most adults dont have pots.. It is getting very difficult to work on my feet all day long then come home and tend to 2 choldren…besides the fact all i have is major medical and it is costing an arm and a leg to make all of these appointments. Sometimes i feel like i have arthritis so bad my joints hurt so bad.. Do you have any insite on any of this?? Thank you
Thank you for your comment. We have referred it to our POTS expert for a response.
I feel for you! It is often a long and frustrating journey to pull together a team to help facilitate recovery from POTS.
Many patients with POTS are hypermobile. Identifying an specific hypermobility syndrome, however, does not usually change practical treatment or recovery. The management of POTS usually helps the blood pooling. Biofeedback and other biobehavioral strategies are often very useful adjuncts to the management of POTS. Most people with POTS need a doctor to guide recovery and adjust medications, and many also are greatly helped by psychologists.
I hope you get things worked out well. Phil Fischer
Hi Dr. Fisher,
We are looking into the Pots Treatment Center in Dallas. Are you familiar with Dr. Kyprianou’s work there with biofeedback? My daughter was recently diagnosed with POTS there at Mayo by a colleague of yours. She also has Marfan. Any biofeedback advice will be greatly appreciated. Also, is Acupuncture something you recommend, or not? Thank you. Sincerely, Katie Zak
My 16 year old son was diagnosed with Pots 2 weeks ago. In July of last year he either fainted or had a seizure while at the eye doctor. They called 911 and the EMT’s took him to the hospital because his blood pressure was so low, 65/45. After seeing a pediatric neurologist, cardiologist and pulmonologist, it was decided that his problem was Pectus Excavatum. We first noticed the indentation in his chest when he was 13. We were told it was purely cosmetic. The surgeon who we met with definitely thought he would benefit from the pectus syrgery but he did not think it explained all of his symptoms.They were extreme fatigue, shortness of breath on exertion, chest pains, inability to exercise. He also has asthma. He again had an episode in January. That is when his cardiologist ordered the tilt tablet test. Within 3 minutes he fainted had what looked like a seizure and his heart stopped for 10 seconds. They now think he did not have a seizure before it is a “cardiac” event caused by his heart stopping. I have read as much as I can find on the subject but my question is about his heart stopping. Is that a normal response in a teenager with Pots? Ever since the test he has been extremely nauseous and now feels worse than he ever has. If the think his heart is stopping ever time he faints should I have him seen by an electro physiologist. To see if he has an arythmia problem. I have talked to Mayo about getting him in there but they referred me to pediatric cardiology, not Dr. Fischer. Pediatric cardiology has a 9-12 month wait. Is there a good doctor for Pots I could take him to in south Florida? Should I be trying to get an appointment with D.r. Fischer instead? Any information you could provide would be greatly appreciated.
We are checking into a reply to your question.
This is quite a story! I feel for your son.
I’ve seen POTS in pectus patients before, but it is probably just a coincidental occurrence. I do not think the pectus actually causes the POTS, and I do not think the POTS changes the need (or non-need) for pectus surgery.
Rare POTS patients do have pauses in their heart rhythm when tilted, but you are wise to want to ensure that there is not a primary heart rhythm abnormality. Any good electrophysiologist should be able handle that.
Then, the POTS can be managed as POTS, once you are sure there is not a heart rhythm problem.
Sometimes, the “seizures” that occur with fainting are regular seizures from the brain, but sometimes they are more of a subconscious response to the fainting (that is not physically dangerous even though it is very scary) rather than an actual brain seizure.
One of our pediatricians here with good POTS experience recently moved to All Children’s Hospital in Saint Petersburg, Florida, but I do not know just what sort of clinical practice he is establishing now.
I hope these comments help. Phil Fischer
Thank you so much for your reply Dr. Fischer. I am taking my son to see an electro physiologist next week. I am anxious to get some of these questions answered so we can begin a treatment program that will help him feel better soon.
Dear Dr Fisher,
Our daughter 15 year old daughter was just diagnosed with POTS. I have read all of these stories and I can barely hold back the tears. I feel as if every story I read is about my daughter. Finally I do not feel so alone.
We live close to All Children’s in St. Pete. Could you please share the name of the pediatrician that recently moved here?
Thank you for your time!
I am grateful to have found this blog with comments from Dr. Fischer. I don’t yet know if my 16 year old daughter has POTS, but I must have a very good GI specialist at Children’s Hospital of WI because he mentioned it at a possibility. She has had nausea and vomiting since fall of 2011 and now constipation. Endoscopy, upper GI, ultrasound, and brain MRI have shown nothing. She had an episode of this a few years ago after having swine flu. She is more severe now and is losing weight. She has hyper mobility, gets dizzy at times, headaches, achy,cold hands, brain fog at times, sudden episodes of extreme thirst, livedo reticulais, and allergies. Her feet and ankles tend to get very red and turn white when you press on them. She also had childhood epilepsy.
I would like to know if there is anyone at Children’s Hospital of WI that he can recommend. Also, my sister and I have lupus. Should she also be checked for autoimmune POTS? Would POTS prevent someone from doing a semester foreign exchange program?
Thank you,
Shari
We are forwarding your comment to Dr. Fischer.
Great questions – thanks for joining the discussion! From what you say about your daughter, it would indeed be reasonable to have her evaluated for possible POTS and for autoimmune disease. The childhood epilepsy is probably not directly related to the current situation, but everything else is likely tied together. Yes, I think good evaluation and treatment can lead to good functioning in life, hopefully with active participation in a foreign exchange program.
Drs. Gisela (pediatric GI) and Tom (autonomic nervous system) Chelimsky recently moved to Milwaukee, but I do not know what their current clinical care availability is. Appointments at Mayo can be arranged by calling 507-538-4206.
I hope things work out well for each of you. Phil Fischer
Thank you so much! We have an appointment March 22nd.
My 10yr old daughter hasn’t been in school since Nov 2011 due to severe naseua, stomach pains, and non stop acid reflux (belches) that no medication has been able to reduce much less stop. In jan 2012 she began feeling dizzy and almost passing out frequentl. A doctor at chop diagnosed her with pots based upon heart rate change and other symptoms. Tics soon started and we ended up in hospital for neurology. An eeg showed negative s did all of her gi tests since Nov(endoscope, colonoscope, gastric empting test, more.). An mri on brain and spine revealed whats believed to be a cyst however doctors at the hospital dismissed this as cause. Also, she was determined to be in early puberty by endocriine. We were told she was just severely deconditioned and just needed pt, ot, and psych.
Prior to nov, she was extremely active, an a student, and an accomplished actress…she wants to get back o her life.
We are desperately looking for a 2nd opinion and a treatment plan. Is there any pots specialist in nj/ny/pa area?
Thanks in advance for your guidance.
Fred
Fred
Fred, here’s a reply from Dr. Fischer here at Mayo who treats patients with POTS:
Thanks for your note, but I am sorry to hear about your daughter’s challenges. Ten is a bit early to develop POTS, but it does happen at that age. The symptoms you describe certainly do sound like POTS could be responsible, and POTS often co-exists with deconditioning; both need to be treated.
Dr. Julian Stewart in the New York City area is a world-class expert in POTS. The CHOP group usually does well, too. I hope things work out well for your daughter.
Phil Fischer
Dr. Fischer, As a practicing Physician Assistant,and the mother of a 16yr old who has been sick since 2009. He is now going to be worked up for possibly abdominal migraine.I have a question for you. How can I differentiate b/t POTS and Abdonimal Migraine with extreme fatigue. The abd pain is associated with orthostasis and tachycardia. Could this orthostasis and tachycardia be associated with lenghty stays in bed because of pain/fatigue as a physisiological response to change in position or part of the whole POTS scenario? How long does the tachycardia last, is it sustained in POTS or does it return to baseline relatively soon. Does syncope have to be part of the picture or the change in heartrate stand on its own with change in position? Many of the other symptoms are present: unrelenting periumbilical pain, nausea, anorexia, extreme fatigue. Full workup including US/abd,upper endoscopy,bloodwork,immunology,celiac and lactose intolerance have all been ruled out. I guess as I post this, my pressing question is;If Orthostasis/tachycardia is present is this not a “normal” response to lenghty stays in bed? Can POTS be remitting and recurrent, with well/better periods in between? The symptoms recur following fever/cough,URI occurring 2-3x per year with the orthostasis,abd pain,and extreme fatigue lasting for months then subside to mild symptoms,but never completely resolving. As a side note the abd pain has been present since 2009 which followed a viral URI. I am really rethinking that POTS may be our diagnosis after seeing ABC WORLD NEWS TONIGHT on 2/29/12. I only saw the astronaut faint and POTS being mentioned. After I read your information on The Mayo Clinic website I am thinking the diagnosis of abd migraine is missing the the whole orthostasis component. I would really appreciate your thoughts on this.
Dr. Fischer, As a practicing Physician Assistant,and the mother of a 16yr old who has been sick since 2009. He is now going to be worked up for possibly abdominal migraine.I have a question for you. How can I differentiate b/t POTS and Abdonimal Migraine with extreme fatigue. POTS AND ABDOMINAL MIGRAINES AND REGULAR MIGRAINES OFTEN OVERLAP. IN FACT, LOTS OF PATIENTS WITH POTS HAVE HEADACHES (EVEN MIGRAINES) AND ABDOMINAL PAIN. I THINK THE VARIOUS DIAGNOSES OFTEN ARE ACTUALLY DIFFERENT MANIFESTATIONS OF UNDERLYING AUTONOMIC DYSFUNCTION. The abd pain is associated with orthostasis and tachycardia. Could this orthostasis and tachycardia be associated with lenghty stays in bed because of pain/fatigue as a physisiological response to change in position or part of the whole POTS scenario? YES, SOME PEOPLE FEEL TIRED/PAIN AND BECOME INACTIVE AND THEN GET DECONDITIONED WITH POSTURAL TACHYCARDIA. BUT, OTHER PEOPLE HAVE POTS AT THE BEGINNING WITH ORTHOSTATIC TACHYCARDIA AND THEN BECOME DECONDITIONED. THERE IS AN OVERLAP WHEREBY SOME PATIENTS HAVE BOTH POTS AND DECONDITIONING WHILE OTHER PEOPLE HAVE EITHER BUT NOT BOTH OF THESE CONDITIONS. How long does the tachycardia last, is it sustained in POTS or does it return to baseline relatively soon. IT IS OFTEN SUSTAINED. Does syncope have to be part of the picture or the change in heartrate stand on its own with change in position? SYNCOPE IS SOMETIMES ASSOCIATED WITH POTS, AND MOST POTS PATIENTS FEEL DIZZY AT TIMES. BUT, MANY POTS PATIENTS NEVER FAINT EITHER. Many of the other symptoms are present: unrelenting periumbilical pain, nausea, anorexia, extreme fatigue. Full workup including US/abd,upper endoscopy,bloodwork,immunology,celiac and lactose intolerance have all been ruled out. I guess as I post this, my pressing question is;If Orthostasis/tachycardia is present is this not a “normal” response to lenghty stays in bed? IT CAN BE A “VICIOUS CYCLE” BETWEEN POTS AND DECONDITIONING WITH EACH AGGRAVATING THE OTHER. BUT, WHATEVER THE CAUSES AND EXACT BALANCE OF PROBLEMS, IT IS ABSOLUTELY IMPORTANT TO GET UP AND ACTIVE IF ONE IS TO RECOVER. Can POTS be remitting and recurrent, with well/better periods in between? YES. The symptoms recur following fever/cough,URI occurring 2-3x per year with the orthostasis,abd pain,and extreme fatigue lasting for months then subside to mild symptoms,but never completely resolving. YES THIS IS POSSIBLE AND HAPPENS. As a side note the abd pain has been present since 2009 which followed a viral URI. MANY PEOPLE DO DEVELOP AUTONOMIC DYSFUNCTION AFTER A VIRAL ILLNESS. I am really rethinking that POTS may be our diagnosis after seeing ABC WORLD NEWS TONIGHT on 2/29/12. I only saw the astronaut faint and POTS being mentioned. After I read your information on The Mayo Clinic website I am thinking the diagnosis of abd migraine is missing the the whole orthostasis component. IT IS POSSIBLY “BOTH-AND” INSTEAD OF “EITHER-OR” FOR THE DIAGNOSIS. I would really appreciate your thoughts on this. Phil Fischer
Thank you so much for answering all my questions. I finally feel like we are getting to the bottom of this and will be on the road to recovery soon.
Dear Dr. Fischer,
Thank you for all your help with answering all my questions about my son. Since February he was seen by Dr. Bushra Malik in Allentown PA and was diagnosed with abdominal migraines. She was familiar with POTS and assured me that if he did not respond to amitriptyline then she would continue investigating for POTS. He responded very to the med and within 6 weeks time he was back in school, pain free and doing well. He felt so well that in July I felt confident enough to let him go to Ghana on a mission trip to build a school for the children in the village of HO. Thank you for all you do.
hi my name is cortney i am 25 years old, i weigh about 114lbs, 5’5, i have been sick for a really really long time more then 10 years. i had every test under the sun. ekgs,hearing tests,mris,cat scans,balance testing,the test that they put sticky things on your head with wires an have u lay there i cant remeber what that test is called, ect. finally jus last month they gave me the tilt table test. an i was diagnosed with pots syndrome. its been a long exhausting road. an have been told i was crazy for 12 years of my life wasnt fun either had all my friends an family telling me i was just looking for attention that was the most heartbraking part of it all is that no one beleived me…
anyways i am seeing a cardioligist that is all about medicine but im not i like to try more natral things first any help with that??? an also i have a lot of trouble breathing all the time lik i forget how to breath an when i breath all my air out i sometimes have to gasp to get more air in. after i eat symptoms get alot worst i cant brwath at all an i get sooo soooo sooooo tired to the point werre i can barly move. i just want to kno the answers if ther3 is any to some of my problems.. N ALSO i would like to know of any doctors out here in massachusetts or close that can help me an that acually will care about how i feel thank u please get back asap my email is cortneyjohnson93@yahoo.com
Thanks, Cortney, for the note. I feel for you with the exhausting journey you have been on. Unfortunately, I do not know of a POTS-specific doctor in Massachusetts. I hope, though, that you get the good help you need. Phil Fischer
on abc new yesterday they had something on the news aboiut pots an said it is curable all u have to do is excersize i think this is faulse an they should not be giving people hope like that like we havent already been through anough
Thanks for your comment. I have not personally seen the ABCNews broadcast yet, but I was able to speak with ABC staff prior to the story being aired. In adolescents, POTS patients usually do fully recover over time, and adults with POTS can improve significantly even though they might not fully recover. The best treatment regimens include several features, and exercise is one of the most important parts of treatment. I hope this comment helps. Phil Fischer
Hi. I live in California and would like to see a POTS specialist. Does anyone know of a good doctor in the Los Angeles area??? Please, please email me if you do at jennpedraza@gmail.com
Thank you kindly!!!
Thanks for the note. Unfortunately, I do not personally know of a specific POTS-specialized doctor in southern California.
Phil Fischer
My 18y/o daughter was diagnosed with POTS 2months ago and is taking Florinef daily, Midrin BID, wearing TED hose, eating salt and feels like she is drowning herself with all the fluid sh drinks. She started passing out last May and it took several months for anyone to listen to us reguarding her symptoms. Her family physician acted as if she were anorexic (because she is so thin) and dehydrated despite my continually telling him she takes in plenty of fluid. I finally contacted a cardiologist at the hospital I work at an got her a consult. After she seen the cardiologist he sent her to the electrophysiologist who diagnosed her with POTS. She is now using a wheelchair to go to school and this has helped however, she sleeps alot. The place she works at has allowed her to work more days but 3hrs a day instead of 8 so she can get the hours in that she used to. Our physician has said that if the symptoms do not improve he will refer us to Mayo clinic. My daughter has a wonder outlook and a sweet disposition but her, like many others, is becoming discouraged. This is her senior year in high school. 6months ago she ran 5mi a day, she played soccer, she made the boys varsity wrestling team and went to state in cross country. Now she has a hard time adjusting to her sedentary lifestyle. Her symptoms have gotten worse since the doctors pulled her out of all sports while we were trying to figure out what was wrong. I have started working with her at home exercising supine so we can build up her tolerence. I as a parent and a nurse feel very helpless when it is my child asking why she is sick. There is great frustration with people not understanding she truly is sick, some of the kids at school have stated that she is just trying to get attention and faking her illness. She is very determined to move 3hrs away after graduating high school and I as a mother can do nothing but worry. Prom is next month and she is so hoping she will feel good enough to dance with her classmates as this is one of her favortie things to do. Once upon a time she was a very active outgoing young woman with 13% body fat, athletic and many friends…I am afraid this syndrome will break her spirit. If there are any suggestions anyone can make I would greatly appreciate it!
Jamie Watoyi
skosmom@yahoo.com
What a sad story! But, this story is very similar to what many other adolescent women experience as they develop POTS. It sounds like she has been diagnosed and started on treatment, but it also sounds like treatment might need to get a bit more aggressive. Taking in lots of fluid (so the urine looks clear like water most all of the time) and eating lots of salt is essential since her floppy blood vessels do end up acting as if she is dehydrated (even when she is not). Exercise is the key to recovery. Medications can also help – and her doctors might decide to try either a beta blocker (like metoprolol) or midodrine to help more. Your daughter is to be commended for her desire to stay active and participate in normal activities. She should know that POTS is not her fault and that it is highly likely that she will get better. Many POTS patients do benefit from psychological support (and even antidepressants) since the condition can wear down even the most optimistic of spirits. Hang in there! -Phil Fischer
I can completely relate to your daughters story! I am also an 18 year old senior who was diagnosed this last week with POTS. I also love to play sports and do all the fun stuff! This year especially I was looking forward to playing basketball and running track, however the doctors have told me that I will most likely not be able to do either. Being a sports fan and athlete all my life this was very disturbing news to me. Coming from a small school my classmates and friends understand that I am sick even though I may look fine. Some say that I am faking to get attention but that is not it. Just curious if you know how long the recovery time is? I would imagine it varies from person to person but I have no idea how long this syndrome lasts. Thank you for sharing your story as it has inspired me and as I am sure many others!
I think I may have the more rare and genetic version of POTS that has a slower onset and progression. My mom has suffered from many of the same symptoms as well. She is in her 60′s and has a pacemaker and takes various medications for heart rate irregularities and syncope. None of which really helps her and they can’t put their finger on it. Well, I have always had dizziness when standing up and sometimes when laying down! I have developed severe exercise intolerance, blurred vision with any adrenal stress, severe episodes of TMJ like cramping and pain followed by neck and shoulder pain, pain or pressure in the back of the skull, then the vomiting will start. My bp drops and jumps while this episode is underway. The episode will last a few hours to a few days. I have difficulty with motor control, cognitive function, speaking, and hearing for up to a week or two after an episode. After being upright for more than 2 hours, I get very low bp and will get dizzy and feel as if I will pass out and have before. I cannot fully empty my bladder and urinate 3-4 times an hour. ahhh! I am at that point with docs that I have spent over $10k to hear that I am out of shape, and have too much stress and anxiety. Oh, and I have every symptom for hypothyroid but my tsh levels are just a few points below what they will treat. nice. I am going to request an appointment at the Mayo clinic unless anyone knows of an experienced POTS doc here in Atlanta or close.
My daughter is 12 years old. She has low blood pressure and started fainiting last summer, about once a month. She increased fluids and salt initially. Her blood pressure has increased. She had a tilt table test and tested positive. She fainted in 55 seconds. I have been told she has orthostatic hypotension. She was put on Mitrodine. She never showed signs of fainting from standing before, until she started the medication. Now, she cant stand up without her heart rate going from 65 to over 140. She usually faints when it gets over 160. She use to have warning before she fainted. Now she has no warning. She would stand up and walk a few feet and faint. Now they have tripled her dose of midrodine and added fludrocortisone. She now wears a pulse monitor so she can sit down immediately when her rate hits 140. Could she have Pots? Do you know of any doctors treating this in the Chicago/Milwaukee area? I have had no luck in diagnosis. She was a very active girl, but can no longer participate
in sports because of her frequent fainting episodes. I am desperate for help. She cant go to school, because she faints daily with no warning now.
I’m sorry to hear about your 12 year old’s difficulties. Lots of adolescent girls develop or progress with POTS and/or orthostatic hypotension, so it is not unusual to see symptoms evolving. But, clearly your daughter is not doing well enough yet.
Dr. Gisela Chelimsky recently moved to Milwaukee and sees POTS patients. Dr. Barbara Deal in Chicago sees POTS patients, too. But, it sounds like your daughter’s doctors already got her started in good directions and might be able to carry on into the future. -Phil Fischer
Is there a link between Lyme disease and POTS? My daughter, 17, has been given a pre-diagnosis of POTS. She had contracted Lyme disease at two and a half years and suffered terribly from misdiagnosis for six months (high fevers, joint swelling, loss of gross motor skills) until she was diagnosed and treated. Since then she has suffered from learning issues, joint pain, and fatigue. More recently (within the past two years) she has developed stomach discomfort, headaches, nausea, as well as the tell-tale dizziness and blackening of vision upon standing up.
Do you know whether Lyme may have caused the POTS, and if so, why the stomach issues came only in her teenage years?
Thanks for any insight you may have.
We are waiting now for further testing.
We forwarded your message to Dr. Fischer.
Thanks for the good question. I do not know of any specific link between Lyme disease and POTS, but any significant infection (mono or whatever) can be a trigger to the development of POTS in adolescents. The story you describe about your daughter sounds very unique. -Phil Fischer
My 13 year old daughter has been told she has pots. We havent been through any testing. The doctor told her to take vitamin b2 and magnesium oxide. Increase fluid and salt and to call him if we need anything. No follow up appointment which leads me to think he really doesnt want to deal it. Is there any doctors you recommend going to. We live in Ebensburg PA. We would like a close doctor maybe pittsburgh but we are willing to travel. Thanks for any help you can give me.
We’re looking into an answer.
I’m not sure you need to give up on your doctor yet! Trying the fluids and salt (and regular aerobic exercise)is a good start. If that is not changing anything over the next several weeks, you could set up a follow-up visit with your daughter’s doctor. Testing might then be considered if things aren’t better. Not everyone with POTS needs formal testing or even medication, and care can indeed be individualized. I hope your daughter does well. -Phil Fischer
I see that Dr. Fischer is a POTS specialist but only treats children. Does the Jacksonville Mayo clinic have any Dr.s that treat adults with POTS?
My 18 year old son has CCTGA and has had three ablation procedures for WPW, Atrial Flutter. He also had a tilt table test that confirmed Neurocardiogenic syncope. Several months ago he began having tachycardia after standing, especially after he has sat in class for a while and jumps up to change classes. A 48 hour monitor confirmed that his heart rate went from 80 to around 195 when he stood up and walked. He spends the rest of the day feeling fatigued, GI problems, headaches etc. The tachycardia is not SVT. Many of his symptoms make me think he may have POTS along with his other disorders. My husbands sister and other family members have all been diagnosed with POTS at the Mayo Clinic. Am curious if this could be a problem for my son.
Dear Julie,
We are sorry to hear about your son’s condition. We cannot make a diagnosis over this forum, but we can provide some more information and offer a phone number to request an appointment if that appeals to you. We have more than a dozen videos on POTS on our Mayo Clinic YouTube channel, but please start with
http://www.youtube.com/watch?v=iJ9bv7jx-Ls
http://www.youtube.com/watch?v=CatWlEGPqG4&feature=plcp
If you Search POTS on our YouTube Mayo Clinic channel there are other videos.
To request an appointment:
Arizona: 480-301-1735
Florida: 904-953-0853
Minnesota: 507-284-2511
Good luck.
Yes, it sounds like your son might have POTS in addition to everything else. It is unusual to see POTS develop after treatment of cardiac rhythm disturbances, but it has happened before. With POTS, the heart rate should have increased dramatically on the tilt testing – in addition to whatever happened with the blood pressure.-Phil Fischer
I just found out about POTS yesterday! Unbelievable to me that this disease is so unknown. My son has been struggling with POTS-like symptoms for a couple of years at least following a diagnosis of Lyme’s and Mono at the same time. We kept thinking it was the Lymes (we live in No Virginia) but he has not been able to recover to his former active athletic outgoing self. He has been told it is anxiety, which is like, it’s in your head, but the symptoms are just like POTS. What is disturbing is to read all these posts and hear that there does not seem to be an relief! It seems like a hit-or-miss treatment that you will either grow out of or not! Help! Really?
Hi Jen,
If you would like to learn more about POTS, please refer to this link and the Mayo Clinic YouTube Channel, which houses several videos on POTS.
http://www.youtube.com/watch?v=iJ9bv7jx-Ls
This first video is informative with our expert, Dr. Philip Fischer http://www.mayoclinic.org/bio/13271989.html
Thank you.
T beta blocker are u prescribing? My 141/2 yr old daughter is suffering terribly. Fluids and salt are not bringing her out of the most recent flare up.
Any beta blocker should work, but I usually use metoprolol. Different ones seem to work better for different people. Low dose propranolol seems good in adults, but it seems like more teenagers get increased fatigue on propranolol. Metoprolol, atenolol, and nadolol seem to work well. -Phil Fischer
I was told my 14 year old daughter may have POTS. She has migraines, tremors from head down that last anywhere from 5-20 seconds (she calls them shocks and they really take the life right out of her, neuro sd they are not seizures) daily dizziness, sweaty spells, GI problems, sinus issues, low grade fever sometimes, heart rate increases upon sitting and standing, cannot stand much physical activity or heat….we have seen an ENT, Cardio, Neuro, Allergist… No abnormal results in testing and we did it all…She was diagnosed with orthostatic hypotension. She takes a salt pill in morning. She has allergies and is on shots for them, she takes Topomax 100mg in am and pm for migraine prevention and this just so happened to reduce her tremors from daily to 2-4 a month. She take fiurcet or 800 mg ibproferin for migraines. She has daily dizziness with problem walking at times. Her vision in her eyes fades to black and she has to sit when standing sometimes or she will fall. She has fainted….She is currently under treatment at a chiropractor that practices pettibon system and I am hopeful about it. Her neck was hurting her for years but no one knew why but this dr found her neck was inverted and she has been slowly getting better, but it is costly and no insurance covers it. I am looking for doctors in the Tampa Bay area that can treat this and also any families who live in the area so my daughter can know that she is not alone in fighting against this illness. Please help us as we are losing hope from being bounced around from dr to dr and being looked at like we are crazy….even family and friends dont understand this….has anyone tried or heard of cranial release?? Just curious if that may be helpful to her…
My daughter got mono a year and a half ago then started suffering with migraines and that symptoms soon turned to nausea, fatigue, vomiting and on and on…when we were dealing only with her migraines and she was not diagnosed with POTS we went to a chiropractor and my daughter did get a lot of relieve from his visits…but after time her symptoms got worse and he no long was able to relieve her pain. She has been hospitalized twice in the last year for migraines. I now believe her migraines were just a symptom of the POTS…she doesn’t take any anti convolution meds anymore..they didn’t help her and the drugs made her worse. Are you seeing a doc for POTS? Have you tried beta blockers? One med that works great for her migraine is migranol…that is for pain relieve only….
Oh, and she has increased her fluid intake and tries to get exercise when she is able to get up without falling….
I’m sorry about your daughter’s challenges, but she does sound typical of many of our patients. And, it sounds like she now is getting good help. If she is not improving adequately on the current treatment regimen, she might be further helped by specific POTS-related (which is the same as orthostatic hypotension-related) medication. I have not personally heard of cranial release being useful for POTS patients. I hope things go well for you and your daughter. While I can not specifically provide information about other patients, some families have found connections through DynaKids.org to be helpful. -Phil Fischer
I am 37 years old and recently dx with POTS. I have been told to increase fluids and salt. I was told that a beta blocker could possibly help. My question is if one beta blocker seems to work better with less side effects? Also, I have to constantly yawn or take several deep breaths to fill my lungs. This feeling worse with exercise or walking up stairs. Is this a sign of POTS? Will the beta blocker make this shortness of breath feeling worse. My resting HR 70 and tilt-table test, HR 160-170. Thank you…
I see in a previous post that Dr Fischer mentioned a peditrician going to All Childrens in St Petersburg? Is it possible to find out who that might be? Also is there anyone else in the area who is familiar with POTS? What other specialists should she see? A gastro? An endrocronolgist? An opthmalogist? Should she see the electro physiologist that was mentioned in a previous post?
I am 37 years old. I was diagnosed about 12 years ago with autonomic neuropathy. I was diagnosed after a pretty searious case of hodgkins lymphoma. In the past 2-3 months I have stated to suffer with fainting, horrible constipation and my tachycardia has gotten tremendously worse. I am wondering if this could possibly be POTS. I live in Utah, does anyone know of any doctors or someone I could call for some support
Sorry, but I don’t know of a POTS-specialized physician in Utah. The staff of the University of Utah, however, are pretty great at most everything. -Phil Fischer
Will someone notify me of this great diagnostic center you speak of in Cincinnati. I was recently diagnosed w/ POTS & I’ve been really sick for the last 8 months. I know I’m not alone. I can just cry!!!! It was hard to get people to believe me & some still don’t understand what I’m going through or just how sick I’ve been lately, why some days I’m fine, others I’m not! It’s been one long debilitating journey!
As I understand it, there is an excellent pediatric diagnostic group at the children’s hospital in Cincinnati. Is that the group of which you were thinking? There is also good POTS-specific care with Dr. Blair Grubb in Toledo. Other good POTS-experienced physicians, Tom and Gisela Chelimsky, were in Cleveland but are relocating to Milwaukee. – Phil Fischer
Hi Dr. Fischer,
I was diagnosed with POTS 1 year ago at the mayo clinic. The doctors have me on 10mg of midodrine 3 times a day and I try and drink lots of fluids and consume plenty of salt. My health has definitely improved in the last year but I’m scared that this is as good as I’m going to get. Every day is just ok. I never have a good day, its either bad or okay. POTS was triggered for me when I was 20 years old. I’ve read that almost all adolescents grow out of it eventually but because I’m 20 does that classify me as an adult? Do you think I might be like this forever? Thank you so much Dr. Fischer for taking the time to read my comments. I hope you respond soon.
Great question! And, I am sure many people share your question. Of course, your own doctors (or at least someone reviewing your medical record) would be better suited to give you personalized answers, but I can make some general comments. First, treatment can be adjusted over time, and sometimes other medications can be helpfully added. Second, you did not mention exercise – perhaps the most important aspect of treatment and recovery. Third, I would stay totally optimistic. With symptoms starting at age 20, I would still expect that you have an excellent outlook for full recovery. Keep up the good work! -Phil Fischer
My daughter is 18 and has had issues with her health her whole life. Started with GI issues in infancy, ITP after MMR, what seemed to be unstable vascular responses – instant headaches and dizzyness with any stress, sensitivity to estrogen (hot flashes and flushing as well as precocious puberty). At 13 found to have +ANA, +SSa, +SSb, +Rh factor — started on plaquenil. No significant joint or muscle pain but did have more of a generalized pain which improved with plaquenil. Became more and more exercise intolerant and had more and more GI issues and headaches — dx’d with POTS in 2010. Meds include Florinef, midodrine and mestinon — as well as Yaz and plaquenil. Has been virtually homebound for 2 years with great fatigue as well as tremendous difficulty thinking/concentrating — currently receiving IV fluid 2x week which has been very beneficial though fatigue remains extreme — Question – 1.) would you suggest pursuing future exploration of autoimmune component? what is your thought re treatment with IVIG? 2.)would mayo rehab be beneficial or is her condition unlikely to respond/tolerate (she did work through Levine protocol though she was by no means ‘cured’ she improved. Thank you so very much –
This is quite a story, and I feel for you all. Typically, POTS begins in teenagers and is not associated with other medical diseases. Sometimes, though, patients with chronic health problems develop symptoms of autonomic dysfunction and are helped by POTS-related treatments. It sounds like your daughter’s POTS might be more secondary to the other problems rather than the primary problem by itself. With that in mind, the non-pharmacologic treatments are often the most important – lots of fluid and salt intake along with a good program of daily aerobic exercise. Knowing that the Levine protocol was helpful is a good reminder to keep going with all these sorts of treatments. I would expect her to overcome the homebound limitations with all these treatments in place. Of course, it is concurrently important to make sure she is not getting to discouraged – similar neurotransmitters to those that deal with the autonomic nervous system relate to anxiety and depression; many POTS patients also develop depression that needs treatment at the same time. But, this is all just background information to lead up to the question you actually asked. Your daughter’s story does not sound like the kind of story that usually goes with an autoimmune basis of the POTS (though she clearly has other autoimmune conditions). So, I am doubtful that IVIG would help; of course, though, no one can really make that assessment without a complete and careful medical evaluation. With her being homebound from whatever underlies the autoimmune disorder and POTS, the three week pain rehabilitation program here at the Mayo Clinic might indeed offer a helpful means of getting her back into action. I hope things go well. -Phil Fischer
Florence, look into mitochondrial disorders. See the UMDF.ORG or MITOACTION.ORG websites for more information.
Dawn S.
My 14 year old daughter has had many of these symptoms for about a year until Jan 2011 when we heard a crash in our bathroom and I found her completely unconscious. When I tried to stand her up her eyes rolled back in her head and she vomited. I put a blood pressure cuff on her and her BP was fine on the floor until I stood her up then it happened again and her BP bottomed out. Although I’m a nurse, at that point I didn’t feel safe taking her to ER without EMS. By the time they arrived she was able to walk to the gurney. The ER docs brushed it off as her being dehydrated. When I brought up POTS, one had never even heard of it and another just looked at me like I was nuts telling me he’s only ever seen a couple true cases of it. We followed up with the head of cardiology and she wore a monitor. The report was vasovagal syncope but just like a writer from much earlier, he didn’t believe in diagnosing POTS. Her symptoms have waxed and waned since then as she’s increase her salt and fluids but have recently become much worse and she is missing more school. She may as well be the poster child for what Dr. Fischer describes. Gifted, type A, active in band and martial arts. She is so frustrated with her symptoms and the “looks” she gets at school from the other kids AND the teachers esp Gym teachers when she has to sit down.
Her PCP has ruled out everything else with labs including negative ANA. We have to wait two more weeks to follow up again after an MRI but frankly I’m tired of waiting and watching her suffer. I researched Cleveland physicians and the CCF website is very misleading with who treats adolescents. Their appointment center is less than helpful if the “terminology” doesn’t lead them to the right physician so they tried to schedule me with a random pediatric cardiologist. I may try to contact a couple of the physician’s office’s directly but that is easier said than done. The red tape to get an appointment is ridiculous. I used to work there so I know. If not, I see there is a physician at University Hospitals? The problem is do these doctors see adolescents?
We are sorry to hear that your daughter has been suffering with such frustrating symptoms. Dr. Fischer may be able to recommend a physician at University Hospitals specializing in POTS however perhaps their appointment line may also be able to direct you to a specialist. We’ll contact Dr. Fischer and get back to you with his response. Thank you.
Hello again. Are you referring to University Hospitals in Cleveland? Thank you.
I see in a previous post that Dr Fischer mentioned a peditrician going to All Childrens in St Petersburg?
Is it possible to find out who that might be?
Also is there anyone else in the area who is familiar with POTS?
What other specialists should she see? A gastro? An endrocronolgist? An opthmalogist?
Should she see the electro physiologist that was mentioned in a previous post?
Dear El,
We live in the Tamap area and our 15 year old daughter was just diagnosed with POTS a few months ago. The process of getting help in our area is extremely frustrating! the doctor from Mayo who relocated to All Children’s is not seeing patients at this time
I would love to connect with you privately, however, I don’t know how to do that, beside posting my email and I don’t know if that’s allowed on this forum.
Susie
There is a wonderful POTS doctor in Pensacola, Dr. Charles “Randy” Thompson. He developed POTS about 15 years ago after a bad bout of the flu. He now practices only part-time and sees only patients with POTS and similar autonomic dysfunction. He is compassionate, insightful, and encouraging. We live in Tampa, and I drive my 25-year-old daughter to Pensacola every few months to see him. Since she was diagnosed 5 years ago, he is the only doctor we have found who is willing to follow-up and work on finding solutions to her debilitating POTS symptoms.
Hello, our daughter was diagnosed with POTS September, 2011 after months of symptoms of blackouts, dizziness, nausea, abdominal issues, fatigue, nosebleeds, nightmares and more. She is taking beta blockers, a steroid, and a few other meds to try to stabilize her tachycardia and blood pressures. She is now having up to 10 episodes per day, with some days being unable to get up on her own at all. She has not attended school except on line, and is struggling there. She can’t really get going in the day until afternoon, and only has a few good hours a day. Some days are good days, but we never know when they will turn into a bad night. She used to just experience a loss of vision, but now experiences fainting with no notice. Excercise really seems to trigger days of episodes, so that has seemed to be counterproductive. We have her on high elecrolyte fluids, salty broth, and V-8 smoothie mix, which is high in potassium and sodium. Are there any Doctors who specialize in POTS in the Spokane, Washington area? She is tall and was very thin, with Marfoid tendancies, but that has been put aside with the POTS diagnosis. Her mom has Chiari and Fibermyalgia. Are these related? How common is POTS, and how common is it to be this serious? Should we look for symptoms in our 12 year old son? He has always experienced some dizziness surrounding activity. I have severe, motion sickness and instant nausea with any g force activity, and cannot even look at things that spin. Connections? Thank you.
BTW, our daughter is now 16.
Thank you for your consideration. In addition to the symptoms I mentioned, some of the worst are vertigo and a shaking feeling, as well as a dream-like state, where she does not feel as if things are real or dreams, even when awake and having a conversation. Numbness of her extremities, inability to even move at times, but the nightmares and stress from them are the worst.
I’m sorry to hear about your daughter’s challenges. Yes, POTS and migraines and chronic pain and motion sickness all seem to cluster in some people and in some families. Chiari malformations are so far not clearly linked to POTS in any general way. I suspect that about 1% of the adolescent population has limited activity tolerance due to POTS, but no one has great data about this. It sounds like you are doing many good things to try to help, but progress is not adequate. I don’t know of a POTS-specific doctor near Spokane, but we do see lots of people similar to your daughter here at Mayo – and almost all show good improvement with multi-faceted care. I hope things work out well for her. -Phil Fischer
I developed POTS from a flu vaccine. There were actually many other problems as well but POTS is one of the problems that’s most difficult to deal with. No one would help me for years and finally when a cardiologist (that knew how to read an echo) did an echo he saw I had heart failure as well due to the tachyarcardia over the years. Now I’m stuck on coreg for the heart failure but it doesn’t help the POTS at all. I think the Mayo clinic is cherry picking patients because most I hear from say beta blockers actually make them worse.
i letfed a message on here the other day and still cant even find it on here,,,i have pots and my heart now not only goes into the 200′s but mostly is in the 30′s and 40′s even just sitting …they have mention a pacemaker …is this something i should concider doing?
Great question – so great that it would require a physician familiar with the details of your situation to make a clear recommendation for you. Some people with heart rates in the 30s and 40s do benefit from pacemakers, but it would require a full consultation to know what you best need. I hope things work out well. -Phil Fischer
Dear Ms. Derr,
I would love to hear from you. You can email me at jewelz1177@yahoo.com. I would love to discuss this with someone local and brainstorm some ideas with you.
El
Dr. Fischer,
My son had a viral infection in October of 2006 when he was 13 years old. He never recovered. He suffered form exhaustion and migraines which eventually developed into POTS 2 years later. He was diagnosed by by a top POTS cardiologist in Chicago who said he should have salty snacks and drink lots of gatorade and must exercise vigorously for 30 minutes each day and would not prescribe any medication until he did so. He was completely exercise intolerant and his condition rapidly declined. He had to drop out of high school in the middle of his sophomore year and spent the next 2 years in a fog. We changed doctors and he was given the usual POTS treatments of beta blocker, florinef and midodrine. He did not respond to treatment. Now many symptoms have resolved with time. He no longer has headaches, stomach pain, nausea, sore throats. He is on sleep medication that is helping get some more rest that his body needs, but a new local sleep doctor( who does not treat POTS) treating him for sleep apnea wants him off all sleep meds and begin therapy for insomnia since he says there are no sleep disorders associated with POTS. My son has the typical description of poor sleep that many POTS patients have: difficulty falling asleep and staying asleep, unrefreshing sleep and daytime fatigue. We know from experience how crucial sleep is. I know you say exercise is the most important part of recovery, but he is so tired all the time. How do we resolve that dilemma? He began improving after being on sleep medication (Xyrem, which is not indicated for POTS but it is the only thing that has let him sleep) for 6 months. Now he has taken his GED, took his ACT and got accepted to college. However, he is currently not on a treatment plan for POTS, and we have been to the sleep center (Dr. Selam) and seen Dr. Mokri at Mayo after undergoing autonomic testing. Normal sweat test, positive tilt table, adrenals did not respond to the cortisyl test, but he had been on Megace for a month so that may have influenced the test. We have a referral to Dr. Bennaroch, but are thinking Dr. Chelimsky may be a good match since we live in Chicago and the 3 trips to Mayo the last 3 weeks have taken their toll on my son. What non-POTS doctors seem to completely ignore are the following issues that perhaps you might be able to explain to us: tired but wired feeling and never feeling the urge to sleep, moderate to slightly severe back and neck pain along the spine and upper back in a cross like fashion (clearly gets worse with sleep deprivation and it interrupts his sleep), low immunoglobulins for at least the past 2 years, low WBC count, but he does not have active infections so basically that is ignored, and fluctuating hormones such as DHEA, testosterone, prolactin, thyroid (he had Hashimoto’s which has apparently reversed itself), and questionable cortisol. He does have anemia which was discovered when he tested low for ferritin. I read here the 50% of POTS patients have that so at least we know it is not something “new”. I apologize for the length, but POTS kids do not have short stories….
You are correct – POTS patients often do not have short stories! But, they usually eventually get to the happy ending. Congratulations to your son on his pre-college successes!
It sounds like you have seen and are seeing good doctors, so I will let you all work through the selection of the members of the team you will have in place to help your son continue to improve.
True, every POTS patient is unique. True, iron deficiency (with the ferritin test being most sensitive) is associated with and seems to contribute to POTS. True, POTS treatment should be individualized and multi-faceted.
You are correct that POTS patients often feel tired (and sometimes even sleepy) but then struggle to sleep. We are learning more about links between POTS and sleep disorders, but we can’t explain this very well yet.
Pain is common in POTS, especially headache and abdominal pain but also all sorts of other pains. When any part of the body is hurting (or sleep deprived or whatever), then the pain can get worse.
I suspect the varying results on immunoglobulin and hormone tests were coincidental and not directly related to POTS.
I do hope these comments help as your son launches out into college.
Phil Fischer
Hi Ale,
My daughter saw both Dr. Gisela Chelimsky in the GI Department and her husband Dr. Thomas Chelimsky from the Medical College of WI during the same initial office visit. Her tilt table testing and sweat testing was done the day before her office visit. She had severe GI issues and had a successful IV migraine treatment. We are still working on her sleep issues. I think you will love the doctors. Good Luck!
I am so grateful for all the wonderful information that is coming out about autonomic disorders! What a blessing! I am a 30 year old mom to the cutest 3 kids you’ve ever seen. Sadly, I am in bed (although trying to get up) most of the day. Mentally, I’m not sure how much more I can take. This is one tough road to walk. And trying to find the right diagnosis takes a LONG time! I have been so sick the last year, including my pregnancy, and have not found anything to help yet. My autonomic nervous system is clearly not right, and I have an excellent cardiologist that is willing to help me figure this mess out. My question, Dr. Fisher, if you have time to answer is…Could a low renin / low aldosterone level cause POTS? So many have told me that I need to figure out what “subtype” I have, and I’m just not sure if I’ve found it our not
It’s all a little confusing! I also know that different meds work better depending on what “subtype” you have. Is this true? I would love an answer, if you have time. If not, maybe there is someone reading through this that understands the low levels. I am determined to get back up and be there for my sweet kids. They do not deserve to suffer much more from this. I WILL defeat dysautonomia, my family deserves it and so do I. Not sure how, but I will!
Thanks for the stimulating questions – even if no one yet knows definitive responses.
We have lots to learn about different sub-types of POTS. So far, though, there isn’t much about POTS typing that actually alters treatment plans. (An exception to that might be the use of beta blockers when someone has POTS and mast cell activation problems.) Whether the POTS is post-infectious or hyperadrenergic or autoimmune does not change initial treatment very often. Only if other treatments were not adequately effective might immunomodulation be helpful for autoimmune POTS. Abnormalities of renin/aldosterone have been seen in some POTS patients, but it is not clear (to me at least) what all this means and how it would affect treatment.
So, typing POTS is interesting for doctors and for research, but it does not often change patient treatment – at least in the patients I see. We are all confused with you, but that does not limit our optimism for ongoing customized treatment and an excellent eventual outcome. Phil Fischer
I have a question about the fatigue piece of adolescent POTS. My son has a diagnosis for POTS — he is seeing Dr. Roy Freeman at Beth Israel. However, my understanding is that Dr. Freeman primarily sees older patients (my son, at 17 was the youngest at least 5 years, if I understood correctly). He has been on midodrine, and also has just completed an exercise study being run by the Univ of Texas SW Medical Center being run by Dr. Benjamin Levine. We just repeated his unmedicated stand test, and the numbers look much better than before the exercise. However, the extreme fatigue and mental fog persists. What is the expectation for when there might be improvement in these areas? Does trying alternative medications (like beta blockers) seem indicated even though the measurable blood flow seems better? Are there other tests other than a tilt table test that would be indicated? Basically, I’m trying to decide if he should be seen by someone who specializes more in teens.
We’re checking on an answer.
Thanks for the note. You have certainly seen some of the world’s experts in POTS (Drs. Freeman and Levine). While I can’t give good personalized advice without actually seeing a patient, I would expect that ongoing good treatment should lead to ongoing resolution of all the symptoms. It seems that “brain fog” and sleep challenges often are slower to resolve even as other symptoms improve. I suspect that ongoing treatment is needed rather than further testing or different treatments, but we’d be happy to try to see your son IF you think that is worthwhile (507-538-4206 for appointments). -Phil Fischer
Many thanks for the reply. Just to clarify, we haven’t actually seen Dr. Levine. He is currently conducting a study with his exercise program being done by patients that are not seen by him. He is studying whether he can work through a local doctor who collects the information for a baseline and then the information necessary to tailor the program. The folks in Dallas then tailor the program and sends it out, and the patient does the 3 months of the planned exercise progression. At the end of the three months new measurements are made, and sent back to Dallas to see if the program works comparably. All support for the program is done via email. It has been interesting, and my son can now do far more than he had previously. We think we might be seeing some slight improvement in the fatigue and brain fog, so we’ll see how the next short period of time goes, and then make some decisions. Many thanks for the information — it is good to hear that brain fog may lag; that is a very hopeful thought to have. After so long of seeing an increasing decline, and hope of improvement is positive.
Dr. Fischer,
I have been dealing with a variety of very complicated health issues. When I was 8 years old I had tonsillitis for almost a year and was seeing my regular doctor, who said it was viral and couldn’t do anything about it. Finally, my mom took me to a different doctor who said that I had been suffering from tonsillitis this whole time when the swab was covered in blood. They took out my tonsils and adnoids and the doctor said that they were in horrible conditions–worse than he had seen before. About 2 years later I developed severe migraines and started seeing an excellent neuro-opthamologist. He started me on 10 mg of nortriptylin and day and also discovered I had a rare condition in which I had drusens behind my eye. He said they were harmless. Life went on and I started to notice that I didn’t have the kind of energy everyone else had. I played sports and always felt like I was working 100 times harder than everyone else and i still didn’t get playing time. We had to up my dose of nortriptylin to 20 mg soon after. I began to miss lots of school because I simply felt ill all the time. Most people thought I was faking it. At the beginning of my eighth grade year I began to have many near fainting episodes. They diagnosed this as hypoglycemia and told me to watch my blood sugar. This continued to happen and they tested me for thyroid disease, diabetes, leukemia, and rheumatoid arthritis. All of these tests came back negative. I became very depressed. Soon, I started to deal with constant nauseau and vomiting. I was throwing up at the same time every night. I began to lose chunks of hair and always looked pale. My eyes began to have a yellow tint to them which was said to be Gilbert’s syndrome since my billirubin is elevated. Nothing was done about any of this. At the end of the summer i was in south dakota and we were in the car sight seeing. I was asleep and began to twitch all over. My brothers woke me up and i began convulsing. I felt like i couldnt breathe and inwas unable to talk or move my right side. I lost all feeling in my right side and my face was drooping really bad. I lost sight out of my right eye for 3 months. Inwas very weak. They did a CT scan and an MRI and lots of blood work and a urinalysis that all came back normal besides my billirubin. The next day i was released from the hospital with a diagnosis of a migraine equivalent. I forgot to mention that i was awake during my convulsions so it was not a normal seizure. When in returned home the same thing happened again except the symptoms lasted three days instead of one and it was much worse. By the time my freshman year started I was very discouraged. I started seeing a medically trained nutritionist/chiropractor who discovered I had scoliosis, so he began to help me out with that. He started me on a variety of nutritional supplements that were supposed to help with my symptoms but they were all too hard on my stomach. My regular doctor referred me to a local rheumatologist. He did all the necessary blood work and blamed it on fibromyalgia. I did have a positive ANA and still had Gilbert’s syndrome but nothing else. My fingers and toes also began to turn blue, which they called Raynauds Phenomenon. I was still extremely fatigued. At this point I could no longer keep up in school and became excersize intolerant. When I would run I would get white spots all over, turn blue, feel faint, and get chest pains. One day i noticed that the inside of the upper parts of my arms had turned blur from my armpit to my elblow. My regular doctor and rheumatologist said it was baffling and that they had no idea what caused it. It happened 3 more times. Since the rheumatologist here in Lafayette was not doing anything for me my doctor referred me to a Rheumatologist at Riley children’s hospital named Dr. Ballinger. I was no longer able to go to school. I asked Dr. Ballinger about POTS because someone had said that I should get it checked out and I did lots of research and thought we may be near our answer. She said that the treatment would be the same as what she is going to do so it wouldn’t matter, but to me it does. I want an answer. It’s difficult to tell people that you don’t know. They always think your faking it. I had already been gluten free, caffeine free, and chocolate free for six months, but I was still throwing up everything I ate. She had me start on a strict diet of rice and beans adding new bland foods every week. I also had to walk two minutes a day and basically start on a toddlers routine of getting up and going to bed at the same time everyday. I wasn’t allowed on electronics one hour before bed. She suggested eight hours of sleep a night and no naps during the day. She also suggested small amounts of yoga. I did all of this except 8 hours was no where near enough so I bumped it up to ten which still isn’t enough and I’m just tired all the time even if I do nothing all day. I went to my neuro-opthamologist because my migraines had gotten worse. I was having headaches everyday and migraines at least once a week. He changed my dose of nortriptylin from 25 mg to 10 mg and started me on 100 mg of neurontin 3 times a day. So far it is working alright. Throughout all of this I was diagnosed with CFS and over active bladder because I always have to go to the bathroom. I am nauseous, dizzy, and lightheaded. I am still losing hair and I’m very weak. That was Dr. Ballingers main concern. I don’t know what to do and I think it may be this. Do you have any insight? Also I forgot to mention that I catch everything that I come in contact with. If someone has a sinus infection then I get it even if I just hug the person. I have also had recurrent UTI’s and bronchitis. Dr. Ballinger believes that this is something autoimmune, but doesn’t think that she can pinpoint it so even she is giving up hope. It’s very frustrating. I know this was a long post. Thank you!
Thanks, Jocie, for sharing your story with us – it is indeed sad, but it is also typical of many of the teenagers we see. It sounds like you face two issues: 1) getting a diagnosis, and, 2) having a good treatment/recovery plan. It would be comforting to get a diagnosis, and a clear diagnosis would help direct treatment, but your body has been so low in so many ways that it might be hard to piece together just which diagnoses came first and which are active now. If, though, there is still evidence of POTS, then some medications might be helpful additions to the treatment regimen. Otherwise, your efforts to gradually recondition (the “baby steps” of increasing exercise session durations) while having a regular schedule with enough sleep will be essential. The Gilbert’s should indeed require no treatment, and the chronic headache/migraine treatment is reasonable (with some teenagers needing significantly higher doses of medication than what you are on). The seizure-like spells could “just” be indications that your whole body is so tired that it wants to shut down, but those spells should get better with everything else being treated. Of course, I can’t give specific advice and outcome predictions without seeing you, but I suspect from your story that you should be able to return to fully active normal living (even if you need some longer-term migraine treatment). Hang in there! -Phil Fischer
My worst symptom is shortness of breath, followed by chest discomfort/pressure, chest weakness, fatigue and heel pain if I stand or walk too long. I never faint.. I have had two tilt table tests (TTT) that both confirm I have POTS. On my 2nd TTT I had my Catecholamine’s measured while upright. The 2nd test showed that my Blood Pressure rose by 15 to 145/? and then after 5-10 minutes dropped to 93/? I also had my end tidal CO2 levels monitored during the test to see if it was due to hyperpnea. My level went from 41-42 to 35-38 range, which were normal I was told when spoke to Dr Stewart.
I have been researching and talking to a lot of POTS people and while some have bad breathing issues, none sound nearly as scary as mine. The only thing that has helped has been compression stocking and drinking tons of water. Adding salts seems to make it worse. Heat, warm shower, cold, sweating, and fatigue all make it worse too. I also can’t exercise that is the thing that makes it the worst… So how can I improve using exercise when I can’t breathe doing it? I have no wheezing and have been thoroughly tested for asthma, blood clots, and lung scarring which all came back fine. Asthma medicine doesn’t help at all, except for the rescue med Xopanex helps about 10% but make my HR jump even higher. It is scary not having any medicine that helps or rescues me when I can’t breathe. I have heard of the ResQguard but I have no way of knowing if my breathing problem is due to pooling or hypovolemia or what… My question is, have you seen any really awful POTS breathing issues, what meds helped the most and what has been the causes found. From the people I’ve talked to this its a mess, everyone having different meds that made them worse and better.. Florinef seems to make a majority worse. Some had success with Octreotide and Mestinon.. But I have yet to hear from any POTS specialist that they know exactly what it is and how to treat it. I’m nervous to take Beta Blockers and other meds that have warning about negatively affecting breathing..
Thanks for your comments. Clearly, you are not alone. Many POTS patients do have breathing troubles without asthma. Sometimes this seems to be due to blood flow changes in the chest, and sometimes beta blockers do help. The feeling of being unable to breathe starts in the chest but, in some patients, does spread to more of an anxiety sort of reaction; when that is the case, “mind over body” sorts of biofeedback and relaxation strategies can help. (People more prone to spreading the symptoms toward overt anxiety are those whose pCO2 does drop more significantly with exercise than yours did.) Some people also seem helped by SSRIs, and we know that SSRIs do help physical symptoms in some POTS patients. But, I think the biggest step to recovery for you will indeed be exercise. Our patients who are similar to you can usually start with brief durations of aerobic exercise and gradually incrementally increase the duration of exercise as they improve their conditioning and regain normal breathing patterns and improved chest blood flow. I hope things go well for you. – Phil Fischer
My name is Kelsey and I also have POTS. I got very sick in 8th grade with a virus and missed 45 straight days of school. My main complaint was nausea. I always felt like i was going to throw up but never did. I was also extremely fatigued. I lost so much weight and fluids that I was hospitalized for 8 days at Children’s Hospital of WI. They did every stomach test possible. It was finally the cardiologist who said that this was not a GI problem, but a neurological one. He diagnosed me with POTS.
A few months later I did the autonomic testing to confirm the diagnosis. I quickly became depressed and would not go to school. Starting high school was very hard. I developed OCD and depression and needed to see a psychiatrist and psychologist. It was and still is very hard to maintain a normal social life.
I am a perfectionist and a straight A student. I eventually worked my way to going to school every day but still frequently would get sick with colds and sinus infections. My nausea eventually went away but my fatigue has gotten worse.
The past couple of years the doctors I’ve been seeing have not really done anything to help me. I get the feeling that they don’t care about me because I am not deathly ill and am going to school. They always just say, “I’ll see you back in a year.” I struggle so much everyday with the fatigue and mental fog. I am sick of being tired.
I am now 19 and at college. I was told that my POTS was supposed to get better in about 4-5 years. I am now going on year 6. I had my autonomic testing redone in May of 2011 (my senior year of high school, 4 years after the initial tests in April 2007). I was very disappointed that my results are not much better than they were 4 years ago. My neurologist didn’t do anything differently. I am on fludrocortisone, as I have been for 5 years. I drink at least 3 liters of water a day and have started to exercise.
I would like to see someone at Mayo, because these symptoms still greatly effect me. My parents have seem to have given up and the doctors seem to have too. I don’t know if I am “severe enough” to go to Mayo?
I have enjoyed reading this blog type thing because it has given me hope. I’d just like a little more. I am at the point, it’s been a full 5 years and I’m almost 20 and not better… will I ever be?
Thanks for sharing your story, Kelsey. The fact that you are going to school and carrying on in life (in spite of the difficulty) is impressive! To be seen at Mayo, you can contact 507-538-4206 to set up a visit. Hopefully, we’d be able to help. Typically, adolescent POTS does seem to get better, but it sometimes lingers until the early 20s. Hang in there! -Phil Fischer
Thank you Dr. Fisher!
I called and am now on the waiting list.
Also, in the mean time I am going to college at Saint Louis University. Do you know of any POTS specialists in the area that you would recommend I see in the mean time?
Thanks!
My 16 year old son has had P.O.T.S. for 2 years. He hasn’t been able to go anywhere for 2 years since an outpatient surgery where this P.O.T.S. that I had to diagnose came on him. He’s so ill all of the time and in terrible pain and can barely walk at all. No answers at all. I don’t know if he’s even able to make it to the Mayo clinic even though we’ve been on a wait list for a while now. I noticed his heartrate skyrocketing in the hospital when he stood up when he was readmitted after that surgery 2 years ago that he came out of barely able to walk and in so much pain in the chest and the doctor that I told her about seeing that just said, have him drink gatorade. lol. And actually he was drinking plenty of gatorade and water at that time. MOnths later, I did some searching on the internet to see what was going on with his heart since he was still so sick I thought this may be connected to the heart rate going way up, I found the diagnosis of P.O.T.S., found a cardiologist to do a tilt table test and he confirmed that he had it. He tried him on Midodrine and Propranol and both just made him worse. He’s just been suffering at home since, with us just hoping he’ll get better since we couldn’t find any help anywhere that we went. IT seems most doctors aren’t familiar with P.O.T.S. or if they are they think it’s a minor inconvenience not realizing how debilitating and how much suffering it causes for some people..
I have a question about treatment…my daughter is seeing a neurologist in Austin but he admits he has only had one other patient with this disorder so I am wondering if it is possible for Mayo Clinic to work with my doctor…I have spent the weekend typing out a medical history for my daughter and I will be faxing it in to the Mayo but I can’t wait 9 months to get in for an appointment….
My daughter had mono around a year and a half ago and her health hasn’t been the same since..she is 17 now…she is a swimmer and wants to swim in college…she was finally diagnosed a few days ago after seeing many doctors and have many tests. We are happy that we have an answer but now comes the research for answers. We feel we have wasted a time looking for the right diagnoses and we don’t want to waste anymore.
She is starting her senior year and I so want it to be better than her Junior year where she missed a lot of school and saw a drop in grades.
any help of advise on how to find good treatment would be great. thank you
We are adding staff to our pediatric diagnostic and referral clinic and hope that eventually no one will need to wait too long for appointments with us. In the meantime, however, our staff are willing to interact about patients with their home physicians. Appointments and physician contact can be arranged by calling 507-538-4206.
My daughter is 24yrs. old. She has experienced what we now know as POTS since the 2nd grade. This disease has raised it’s ugly head throughout the following years. She has had times of what I would call silence, where she has been able to live a “normal” life. All of that eveded about 5 months ago. She blacked out hitting as a result she hit her head on the counter and ended up in the ER for a severe concoussion. Since that day she has had numerous blackouts and is now seeing a specialist.
She has been taking midodrine and it has helped with the blackouts. She still has the dizziness and fatigue. Currently she is not able to work. Is there anyone who specializes in POTS that would be able to help her? We live in central Illinois. I would appreciate any advice that you might be able to give to us.
Mickie
Sorry about your daughter’s troubles. Sometimes, it is hard to know how much trouble is from POTS and how much is from other associated problems (like a healing head injury). One way or the other, some of the adult doctors at Mayo might be able to help – your daughter can call 507-284-2511 for the Clinic operator. And, your daughter has been special for a long time; POTS is unusual in kids as young as second graders. I hope things work out well. -Phil Fischer
Dr. Fischer,
Has POTS been related to Crohn’s Disease?
I am 35 years old and was diagnosed with POTS 6 years ago. My symptoms have increasingly worsened over the years. I have read alot about teenagers and patients in thier early 20′s but I have not really heard about someone in thier mid 30′s. I live in S.C. and each Cardiologist that I have seen has not had much knowledge about POTS. I am wondering if anyone knows if there is a hospital or program of physicians that specialize in POTS. I am willing to travel to get some help. I have done all the meds (with little to no relief) I am currently getting weekly IV fluids but my veins are slowly giving out. I am just at the point that I am willing to do what it takes to get help and on the right tract. Please any advise is appreciated.
Ms. Gordon, thanks for sharing your story. It is good to see that awareness of POTS is increasing, but there are indeed still many people who are not knowledgeable about the condition. If you didn’t want to travel as far as Mayo Clinic (507-284-2511 to ask for scheduling information for the POTS clinic with both autonomic neurology and cardiology involved) for care, there is an excellent group at Vanderbilt in Tennessee that cares for lots of POTS patients. Recent research suggests that even adults with POTS can improve significantly over time, and I hope you do well. –Phil Fischer M.D.
i have a 10 year old daughter who since June 2012, has been having severe nausea and abdominal pain. She’s had all kinds of tests done by her pediatrician and by Pediatric GI, all were negative. She also suffers w/ constipation. It is now August, now chronic headaches is added to her symptoms. She has headaches ALL day. Nothing is helping. She’s been on several medicines for her symptoms, nothing has worked. She cries all day from the pain and nausea. I googled her symptoms, and dysautonmia keeps appearing. My problems is, she doesn’t have the inability to stand or fatigue or dizziness. She has only the symptoms listed. No evidence of tachycardia. My question is, would she be a candidate for this diagnosis since no one else can tell me what’s wrong with her, and if so, how and where do I get her treated? I live in Louisiana, but I’m willing to travel! Please help!!
I’m sorry to hear about your ten year old’s struggles. Indeed, this is a puzzling story.
If you wanted to come to Mayo Clinic for evaluation, you could call our Pediatric Diagnostic and Referral Clinic at 507-538-4206.
Otherwise, I am doubtful of the POTS idea due to the missing features that you mentioned. I suspect that the GI motility issue is more primary. But, I can’t say much from a distance without more thoroughly evaluating your daughter.
I do hope things work out well for her. Phil Fischer
hey! I just wanted to share my story. I hope it helps to give some of you hope. In April my family went on the Mexican Riviera cruise. It was soo much fun! The second to last night I was up all night. I was terribly sick and went to the bathroom more times then I could count. When my parents finally woke up and called my sister and my room to wake us up, they were mad that I didn’t call them during the night so they could’ve helped. I spent the rest of the day in the room sad and mad that I couldn’t go lay in the sun or swim. I couldn’t eat anything. I thought it would go away. When I got home I spent so much time at home and missed so much school. It was hard not being able to do things that my friends were. I wasn’t able to dance which is pretty much my life and that was probably the hardest part. Sitting out at dance class was one of the hardest things I’ve ever had to do. My friends seemed distant. I dont think they fully understood how hard it was for me. Stay strong guys. You will get through it. I know I have. Doctors tested me for all sorts of things and couldnt figure anything out. I finally went to a doctor and he knew exactly what it was! It was a miracle! I was diagnosed with post infectious IBS and POTS. I have been on anti depressants since then to help calm the nerves in my stomach while it is in repair mode. I am on my high school drill/dance team. And it has been very difficult. But, it has helped tremendously! We practice in the Mormons for about an hour and a half and on the weekends if I don’t exercise in the morning I can feel the difference. For those that have pots, please, please get daily exercise. Start off small and work your way up. I promise it will help! I know once I had the ability to dance again I felt alot better. It really does help. Also, stay hydrated. I know I get sooo sick if I don’t. Please keep water with you and make sure you don’t over heat. It’s always worse if you are in the heat. Please take my advise! I know that it is hard for me and I dont even have a very severe case of it. I will keep all you in my prayers!
*Mornings
not Mormons
Dr. Fischer,
After researching POTS, it seems likely that I have it. I had a pretty nasty sore throat and was very congested, and I got better, but after about a week of feeling healthy I started feeling lightheaded and extremely fatigued. I then began to get frequent heart palpitations, especially upon standing. I noticed that my heart was racing every time I stood up; however, when I stand up for a while and breathe deeply, my heart rate will slowly decline. My doctor prescribed a blood pressure cuff for me. My systolic pressure is slightly high (about 120-130, and I was very active until I started feeling crummy). However, my diastolic pressure is very low, about 50 usually. I noticed that when I would stand up from the supine position, my pulse would increase from about 60 bpm to almost 130. At night, I feel palpitations and sometimes get PVCs. One night when I was lying down, my heart started racing randomly – it increased to about 150 bpm – and I told my parents who thought I should go to the ER. With 2 liters of saline my heart rate slowly went down. My chest x-ray and EKGs were normal, apart from the sinus tachycardia, as well as my blood work. Is POTS related to inappropriate sinus tachycardia in any way? And is it possible that I have POTS even if my heart rate slows down after I stand for a while? Lastly, I’m 18 years old and previously loved exercise but now with the slightest exertion I feel exhausted and my heart races. Are there any physicians that know about POTS in the bay area? Specifically at Stanford or in San Jose?
Thanks so much,
Emily
Hi Emily,
Thanks for your questions. We’ll forward them on to Dr. Fischer.
My 15 year old daughter was diagnosed with POTS about 2 years ago after being ill for several years with stomach pain. She ultimately ended up having her appendix removed after about three years of pain and would you believe there were worms in her appendix. She felt great for two months and then woke up with a migraine that never went away and this was quickly followed my muscle and joint pain as well as a chronic daily headache, insomnia and tachycardia. She is on a Propanilol and Florinef and goes for weekly saline iv treatments which help with her muscle and joint pain. Long story short is that we were vacationing in Hawaii at Christmas and her symptoms lessened until she had no headache and no muscle or joint pain and was sleeping 12 hours straight! Our doctor said it was a coincidence as she was likely just relaxed and had no stressors. We researched Hawaii and discovered that the barometric pressure is constant and high which is unique to the islands. I took my daughter back to Hawaii this summer for 5 weeks and within 3 days her muscle and joint pain was gone, her headache disappeared after 5 days and she was sleeping 12 hours a night. Not a coincidence. Upon returning back home within one day she had a return of all her symptoms and just experienced the worst migraine she has ever had during a 15 point barometric change over the weekend. She truly is a barometer. Are all potsies affected by the barometer or is my daughter unique? Is there any evidence to support that if we lived in Hawaii for a year or two that her body might heal? Is it worth the cost of coming from Canada for an appointment at the Mayo Clinic or is there any way to do a telephone appointment?
We have forwarded your question to Dr. Fischer
What a fascinating story! There are lots of things that can trigger and help POTS symptoms. I’ve had other patients report that barometer changes affect them, but this is not at all common. I think the key will be to balance all the modifiable parts of life in a way that makes daily function possible within the usual home setting. This might, as your doctor suggested, involve relaxation therapy, and it will likely involve increasing fluid and salt intake, getting regular sleep with good sleep habits, and having regular daily strenuous aerobic exercise. I would remain optimistic that she can do this in Canada without needing a distant move. We do not do phone consults here – sorry. I do hope your daughter recovers well. -Phil Fischer
Dr. Fischer: My daughter and I are planning a trip to Dallas Texas to the POTS treatment center. I really would like to get your take on this before we go. The trip from NY to Texas will be a financial burden but I would raise a million dollars if that’s what it would take to help my daughter. She is 23, taking beta blockers and celexa, can take short walks and that’s about it. The hot summer kept her inside for 3 months, she perks up with cooler weather it seems. I cry every day for these poor kids. Please post your comments on the POTS treatment center in Dallas, Texas. Thank you so much for your time.
We have referred your comment to Dr. Fischer
Thanks for your dedication to your daughter and to other POTS patients. Are you referring to Dr. Ben Levine’s center in Dallas? If so, that center seems to me to do superb work with POTS patients, especially those in whom deconditioning is a major contributor to disability. I hope things go well for your daughter. -Phil Fischer
Dr. Fischer: Mary Kyprianou has a POTS treatment center in Dallas, Texas using biofeedback. Have you heard of this treatment? What is your take on this?
My 15 year old Daughter has been treated for severe migraines for years and misses a LOT of school. Recently she has been fainting. Now it has progressed to Migraines, fainting, heart racing, severe chest pains and can’t catch her breath. She is in the school band, and twice in the last week she has collapsed onto the field and has to be carted off. She now has to sit out, and the doctors can’t seem to get us the help we need. She is so upset and it breaks our heart. Could it possibly be Pots? This is the first I’ve heard of it.
We have forwarded your comment to Dr. Fischer for review.
Thanks for your note, and I am sorry about your daughter’s troubles. POTS and migraines do often co-exist, and this could be possible. But, many other things could be possible, too. I suggest that your daughter get a good evaluation from a physician. This might turn out to be POTS, but there are other more likely possibilities that would need to be considered along the way. I hope things work out well for all of you. -Phil Fischer
Dr. Fischer: Do you have any insight or opinion on Mary Kyprianou’s biofeedback treatment in Dallas, Texas for POTS patients. I would really like your opinion before spending my life’s savings on a trip there for the treatment for my daughter. Thank you for your time and thoughts.
please help. my daughter has been passing out for going on 2 years.we have heard every thing from migraines,vaso vagal syncope,convulsive syncope,to it’s all in her head.then we meet a lady with pots,she has many of the same symptoms. She has been on homebound for a year and a half now, and this is her senior year and she’s attempting to attend school. It’s putting alot of stress on her, but she really wants her education and she’s not getting it on homebound. We had finally found a doctor close who knew about it. But when he scheduled a tilt table test she had a full blown anxiety attack due to the fear of being strapped down, she’s had bad experiences with that in the past. And now he won’t see her anymore. She wrote a letter apologizing for it. I’ve researched so much on POTS from the Mayo clinic and the Nashville Clinic and I’m pretty sure she has it. She passes out and when she does her muscles tighten and she often convulses. When she’s out her face is usually hot and her feet are like ice. The only trigger that we really have found is that she goes out alot after urinating. If someone moves her when she’s passed out they usually pull a muscle, so were constantly in and out of the ER. She has chronic pain in her feet and legs. Her feet often stay cold, sometimes feeling like a corpse. Her skin is often discolored, mainly her feet turning purple, her nails turning purple, and her arms getting red and blotchy. She cannot stand temperature changes whatsoever. She’s always either hot or cold. Never comfortable. Cold whether seems to affect her worse but mainly she stays hot. She barely eats because just about everything makes her nausea or tears her stomach up, if not a combination of both. Surprisingly the easiest thing she can eat is something spicy. She has alot of diarrhea. She has insomnia and barely ever sleeps. She has a very low tolerance to medication, and she’s been having alot of anxiety problems lately. She has exercise intolerance, walking distances is hard on her. When she does exercise any the red blotches appear. Her vision is often blurry. She’s gotten so forgetful. She’s often frustrated in school because she doesn’t know how to study anymore because she can’t remember. She wakes up tired and weak, and she never seems to have any energy. She has irregular periods, and when she does have her menstrual she’s much worse and she’s usually really sick. I currently think her blood volumes low because she has missed this month, and they can’t seem to get her to bleed lately. Last week the school sent her by ambulance to the hospital and they stuck her five times trying to get blood and put in a IV. They never established an IV. Then today they stuck her three times and her IV was constantly hurting her. Everyone says she has such little veins. And they often roll and disappear, She is a hard stick all together. And I was wondering if anyone could help us?
We have referred your post to Dr. Fischer.
Wanda, we are sorry to hear about your daughter. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at http://www.mayoclinic.org/ under “request an appointment.”
It started while I was pregnant 16 weeks in the er with heart rate of 145. Given fluids and heart rate came down. As I progressed in pregnancy symptoms became worse wound up on bed rest. My heart rate would elevate immediately when standing from around 70 to 120 to 130. My Bp all over the place. Orthos had 40 to 50 point difference especially when standing. My cardio started me on flurinef which seemed to help decrease my heart rate and increase my Bp which was mostly very low when standing. I had baby and Orthos went back to normal. I still can not tolerate standing still for more then a few minutes. If I stand still my heart rate elevates and I start to sweat and feel like my head will explode. My Bp only elevates slightly when standing. I also have serious anxiety when standing due to experience while pregnant. I can tolerate walking without any problems. My heart rate stays steady no major issues. It just seems to be standing still. I was taken off Florinef after I had baby because Bp was going to high. Now I am drinking lots of fluids and trying to walk. But what about the standing can I improve that. I am on Paxil 20 mg for anxiety and postpartum panic attacks. I also have blurry vision. No other symptoms though. Thanks so much!!
We have forwarded your note to Dr. Fischer
Congratulations on your baby! Your situation is fairly unique, so I hesitate to give any specific advice without knowing you in more detail. But, I will make a few general comments that might be of interest to you and to others who see this note. First, it is unusual for POTS to develop during pregnancy. In fact, people with POTS who then become pregnant often find that their POTS improves or even resolves during the second half of pregnancy – presumably due to some helpful hormonal effect. Second, other things can act like POTS – such as being dehydrated or having a low blood volume (as can easily happen in pregnancy) or even anxiety (due to effects of neurotransmitter chemicals on blood vessels as well as in the brain). Many people find that their POTS-like symptoms go away when they get physically active and deal with hydration and anxiety. I do hope that you get good medical care as you go through this and that you recover so as to fully enjoy the privilege of parenting. -Phil Fischer
Hi,
I am curious! Do I still have POTS? When I stand up I have an initial rise of 20-30bpm in 5-10 seconds, then it slows to 85bpm for 10+ minutes. Symptom wise I only feel PvCs but that normal for me laying, sitting or standing . I was diagnosed POTS, but is this non-sustained “surge” pots?
My 19yr. old daughter has POTS and it seems to be getting worse, and worse. It seems to have started with a overdose of thyroid medication. She has passed out 8 times in the last 3 days. The last time with a ambulance trip to the hospital where they couldn’t find anything wrong. What can we do?!? Is there anyone you can recommend in the High Desert/San Bernardino area of CA.?
We’ve referred your question to Dr. Fischer.
I am sorry to hear about your daughter’s troubles. Unfortunately, I do not personally know anyone in southern California who deals with lots of POTS patients. Lots of interacting medical conditions, though, can cause fainting, and your daughter (with thyroid issues) probably deserves a good evaluation looking at POTS and other situations that can aggravate it. I hope things work out well. -Phil Fischer
Mike – Dr Thomas Ahern at Scrips in San Diego has a wonderful reputation among pots patients
In restrospect, we feel my now 21 yr old daughter had migraines as early as age 3. She had mono in 5th grade. Migraines worsened as she started high school. Finally diagnosed with “migraine disorder “, general anxiety, which included GI distress. She missed half a year of school as her initial neurologist was unfamiliar with medication overuse headache. Multiple specialists and medications in the past 5 years, most of which gave us no clear diagnosis. She was diagnosed withADD her senior year of high school. She had been very active in multiple activities in middle school -band, soccer, and always dance classes 3 nights a week. She felt good enough to start college several hours from home, but returned with extreme exhaustion after her first semester. This is when we noticed her tachycardia (120 beats at rest) and had a myriad of tests done that were “normal”. She is on atenolol. Her energy never returned after her chronic daily headache episode in high school.
Her migraines were fairly controlled, and she weaned off her prevention medicine, Nortryptilline 100mg daily and Gabapentin 300mg bid. That summer she began with severe nausea, reflux, and abdominal pain that was initially treated as a virus. Within a month she was at the ER and diagnosed with cholilithiasis. Her gall bladder was removed as recommended and, in fact, her doctor thought that could be the source of much of her discomfort.
Unfortunately, the surgery did not eliminate her pain or G I symptoms. The gastroenterologist diagnosed her with Gastroparesis. She takes Domperidone to help her G I symptoms. The top problem she has is pains that radiate from her incisions sometimes, but mostly pain is in the right side of her back. She is on Tramodol for almost 2 yrs now and it only helps control the pain, not eliminate it. We have been told by her internist as well as her pain specialist that there are no other diagnostic tests to be done. She is waiting for enough time to pass so insurance will cover another set of RA treatment/injections into her intercostal nerves to block the pain. This gave her relief once foe 5 months, but the last treatment did not help.
I write this lengthy message, as I am desperate to know that my daughter’s care is on the right track. At some point when her tachycardia started, POTS was mentioned,but no specific testing done. I will add that she has a cousin with a diagnosed mitochondrial enzyme deficiency (carnitine), which I mentioned to ALL on her medical team. I am a veterinarian and have spent a fair time on PubMed sites and doing my own research as my time and energy allows. I can’t help but want to roll all her symptoms into one diagnosis and get so we can address a source of the problems, instead of addressing each symptom independently. I feel like autonomic disorder explains a lot of her symptoms (she also sweats excessively, has trouble with temperature regulation, and trouble sleeping through the night when she does sleep).
I would appreciate your input and recommendations on what our next step should be. She is mostly at home, in bed, but taking an online college course & trying to hostess at a restaurant 2 nights a week just to get out of the house. Thanks so much
Janice, thank you for your comment. Unfortunately, we cannot offer specific treatment options for your daughter via this form of communication, but if she would like to consult with one of our specialists then please have her contact Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511.
Hi Dr. Fischer,
I am a 30 year old male that was recently diagnosed with POTS after going through MRI’s, MRA’s, EKG, echocardiongram, lots of blood work, etc. to rule out other things, which all came back negative thankfully. I was diagnosed after tilt table testing along with breathing tests (deep breathing, valsalva maneuver, sweat testing). I was given a score of 4 out of 10 on the CASS scale. I know POTS is more common in females and not so common in male adults like myself, so I was wondering if you knew of any studies (yours seemed to focus on teens) that identifies things that help adult patients (especially males) dealing with POTS. I have been put on an exercise program that is basically the same used by Dr. Levine and .1 mg of Florinef with high salt intake and fluids. I am about 3.5 weeks into my “treatment”. Any optimism, insight or ideas for me to talk with my doctor about that could help me are MUCH appreciated!
Thanks,
Brian
Thanks, Brian, for your comments. It sounds like you got a clear diagnosis and sensible treatment. YES! There is LOTS of room for optimism! With appropriate treatment, most POTS patients show significant improvement, even during the first year after the diagnosis. I’d suggest you keep up the great work and anticipate lots of good recovery along the way. –Phil Fischer
Thanks for the reply Dr. Fischer. I am now on day 45 of my exercise program. I am happy to say I have already seen improvement in my symptoms. I have gone from being incredibly lightheaded, off balance and dizzy when simply standing, to being able to get back to work full days (although I spend a lot of time sitting as I still get the symptoms when standing still or walking around too long). I want to let everyone out there who has recently been diagnosed or is starting an exercise program for POTS treatment that exercise program has really helped me thus far and although I still have lots of progress to get back to what I would say is “normal”, I am motivated. I look forward to go to the gym everyday because I know it is slowly making me better! Results come slowly, and you have to take the workouts slow also but seeing progress makes me believe I WILL get better and that you will too! Just be mentally tough (easier said than done) and hang in there! YOU CAN DO IT! I am on a minimum 3 month program, so almost halfway done and an additional 3 more months that I can progress to if needed/wanted. I look forward to day 90 and/or 180 and to getting my life back! I rememeber the lowest of lows the day I was diagnosed. I could barely walk without wanting to faint from lightheadedness, and now I am making progress towards recovery. Everyone out there who is feeling bad and struggles to do the everyday things that we all love to do, know that you CAN do it and get back! I know I will!
My son is 12 and after researching dizziness and stomach ache I found out about POTS. I am taking him to a GI specialist tomorrow because our doctor thinks there is something chronic going on like possible IBS. But after all that I have read I think that I am pretty sure that this is what he has. he has recently gone thru a growth spurt. Also very sick last spring, but was told it was a virus. He also was playing football this fall and a larger kid picked him up by the collar and threw him on the ground onto his back. About a week later he was complaining about a stomach ache. That has come and gone for the last 2 months. Then a few weeks after the stomach aches began he started to feel dizzy. Sometimes he is hot and cold. He has missed 15 days of school so far this year. I am going to forward some info to our family doctor tomorrow. Our specialist is at the University of Wisconsin’s children’s hospitable. I was also wondering if a chiropractor might help since he was hurt playing football. Could the spine play a roll in inability for the brain to control the blood flow? Also I read that someone’s child had nosebleeds and my son has had quite a few nosebleeds in the last year. Does that go along with POTS?
HI Penny, thank you for your questions, we have passed it along to our specialist for possible comment.
Thanks, Penny, for your note about your son. You raise several interesting issues that are likely relevant to many other people reading this. First, POTS and irritable bowel syndrome do overlap. Some people seem to have both, and each seems to relate to abnormal neurologic function related to bowel and/or blood flow. Second, yes, injuries that put people out of action for a while (like illnesses) can sometimes trigger the development of POTS. Dizziness, hot-cold variations, and abdominal discomfort are all common symptoms in patients with POTS – but can, of course, be due to a variety of other conditions as well. While the spine definitely relates to many aspects of the nervous system, POTS only rarely relates to spinal issues; other autonomic problems can result after spinal cord injuries though. Finally, I do not know of any specific link between POTS and nosebleeds even though I have seen a few patients with both concerns. I hope things go well for your son. –Phil Fischer
Also do you think that a cardiologist would be the way to go to be truly diagnosed?
This is a question for Dr. Fischer.
I’ve had POTS since I was 17, it came after my third year of playing high school football. Since then I’ve had chronic headaches, lightheadedness, nausea/vomiting, inattentiveness, and difficulty concentrating. I’m now 24. Since then, my nausea/vomiting has gone away but the other symptoms remain. I only recently got diagnosed and am taking in Florinef with increased salt and water as well as exercise.
I read that people in my age group eventually outgrow POTS. It’s been 7 years for me, I’m just wondering if it’s too late or if you have seen POTS patients in my similar category who’ve still made significant improvement.
Also my next question is POTS effect on the brain. Do you think POTS causes brain inflammation or damages the brain in some way? Does POTS lead to dementia?
We have sent your questions to Dr. Fischer.
Good questions! I am sorry to hear about your ongoing struggles. Yes, it seems that most people still can “outgrow” their POTS, and that others can improve significantly. I would not give up! And no, I know of no link between POTS and either brain inflammation or brain damage or dementia. I would guess that exercise will be a big part of your recovery. And, I trust that your doctors made sure there is nothing else like iron deficiency (best measured with a ferritin test) aggravating your POTS. Hang in there! -Phil Fischer
My daughter is 31 and has had POTS for a few years.
She is having a really hard time not losing weight. Is this a common sympton of POTS?
Any suggestions?
Thank you for your note. I forwarded your questions to Dr. Fischer and he sent the following reply: I’m sorry to hear about your daughter’s troubles. Many POTS patients had nausea and abdominal discomfort, and some have irregular stooling. Weight loss, however, makes me wonder if there is something in addition to POTS going on. If, however, a full medical evaluation reveals no other cause of weight loss, then perhaps the POTS symptoms can be blamed. Either way, she’ll need careful medical care to maintain all aspects of her health. I hope your daughter does well. –Phil Fischer
My 15 year old daughter has POTs. I found a POTS treatment center in Dallas, TX. Does anybody know anything about this place? Is it reputable?
Hi Miranda, Thank you for your comment, I will forward to Dr. Fischer for possible response.
I was wondering if there are any Dr.s in California how are specialized?
I saw Dr. Fischer almost 6 years ago and went through a barrage of testing, all came out “inconclusive”. Earlier this year, I had a different doctor look at the same test results and I was told I had a textbook case of P.O.T.S. It is very frusterating to know that even as he became an expert, he did not notify me. I was left without treatment for years.
My 16 year old daughter has many of the symptoms I see listed here but has not been officially diagnosed with p.o.t.s. Can you recommend a doctor in the Indianapolis, Indiana area that is familar with p.o.t.s. Thank you so very much.
Thank you for contacting us. We have sent your question to Dr. Fischer and will get back to you.Thanks again.
Is there a chance of a good recovery as an adult with pots my wife must hear their is hope James
my husband has been diagnosed with POTS for almost a year. He is on a beta blocker but takes a blood pressure pill as well. He is extremely fatigued working and basically rests on the weekends. When he has a spell, his blood pressure has dropped to 53/32 which seems very low, leaving him very tired. He is a 59 year old male and it is difficult to find much on adults in this age group. He does walk every day even though it is a struggle. Can you recommend anything else that would be of benefit. It is very discouraging to see him never feel well. He has more headaches and digestive issues. Thank you so much for your advise. He lasted only a bit on the tilt table test, as it brought on iimmediate dizziness, to the point of passing out. Thank you again!
Hi, Thank you for contacting us. I have forwarded your questions onto our specialist for possible repsonse. Thanks.
As a pediatrician dealing with POTS, I’ll make some comments, but your husband’s own doctor will need to make actual clinical decisions with him. Significant drops in blood pressure can happen in people with POTS, but the story of a 53/32 blood pressure makes me wonder if orthostatic hypotension is more of a problem than “just” POTS. If so, then midodrine or another medication might help. Increasing fluid and salt intake and continuing a daily exercise regimen will also be helpful. It sounds like he’ll need to work out a schedule so he gets enough sleep during the week, too. But, mostly it sounds like medication adjustments will be useful for him. I hope these general comments help. –Phil Fischer
My wife is 40 and has POTS she is not accepting the news well we are currently working out the best medication for her this is quite difficult she is also on depression pills to ease the pain accepting this is hard for her with three children at home . All we won’t to know is with hard work eg exercise the right meds and a positive mind she can beat it . What do you think we would appreciate your honesty. Thank you for reading this . James
I really need some help for my daughter. after 15+ years of saying it was all in her head she was dignosed with pots 3 years ago right after she became pregnant (has a beautiful 2 year old little girl)every since she had the baby her pots has gotten worse, she was put of salt tabs and give compression socks, not long after she ended up in the er with severe stomache and chest pains, they said the salt was affecting her kidneys so she stopoped taking it. still having problems crying from the pain in stomach and chest. she tries to drink water and gaterade but she gets nauseas every time.
What can i do to help her,been trying to take her back to her nuerologist for 8 months now and they keep postponing her appt. she is getting really depressed, because she cant do the things she wants with her daughter, she is 22 and wants to move out and raise her daughter, but she cant. please tell what i can do to help her.
Hello Tammy. We are sorry to hear about your daughter. Are you near a Mayo Clinic? We have locations in Rochester, MN; Jacksonville, FL and Scottsdale, AZ. You can obtain the phone numbers and addresses for each by visiting http://mayoclinic.org/contact. You should have her set up an appointment with us.
POTS is what happens when high folic acid in the food supply “masks” a vitamin B12 deficiency. Patients no longer have macrocytic anemia but they do develop the autonomous nervous system dysfunction caused by low B12.
Check B12, homocysteine, methylmalonic acid.
Is the patient a vegetarian? B12 is only found naturally in animal protein. Otherwise you need a supplement. Has the patient been taking acid suppressing medications or oral birth control pills? These block B12 absorption.
Make sure the patient hasn’t had nitrous oxide anesthesia, which inactivates B12 making it unusable in the processes our bodies depend on.
Elissa Leonard, Producer
B12 Deficiency in the Age of Folic Acid Fortification
http://youtu.be/BvEizypoyO0
Am a woman with Hyperadrenergic POTS, have a norepinephrine level over 1400 and high dopamine as well. Suffer with severe inability to sleep, and am unable to control my body temperature, have extreme ‘sweats’, vomiting episodes, etc…
Am currently taking Methyldopa, yet am still in this condition. It’s unbearable.
Have traveled to Mayo many times in the past, but because I have the diagnosis, and have had a through cardio workup, I desperately need to find a treatment and am not certain Mayo is the place that can help me with that.
Am unsure where to turn. Thank you in advance for any thoughts you might provide.
Thank you,
Katie
Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735, Florida: 904-953-0853, Minnesota: 507-284-2511). Best wishes to you, Katie.
Please remove my full name from my post!
Thank you!
Is it OK now? Was getting rid of your last name from the comments what you were hoping for? Thanks.
hi, my name is nick farrell, im a 17 year old boy living in illinois. For my whole entire life, my absolute passion has been sports. Baseball and football is my life, after being symptomatic and passing out at football lifting i had to see a doctor. After seeing numerous doctors, about 13 months after passing out at football i finally had been diagnosed with POTS. i had to forfeit my junior football season. I was unable to run on the treadmill for more than 4 minutes at about 5 mph. Ive tried flucrocortisone, it was a nightmare. im currently taking midodrine 2.5mg pills. 7.5mg, twice a day, and ive seen next to no improvement. My cardio is only at about 7 minutes on the treadmill at about 4 mph and thats not nearly enough to get back into football. Does anyone have any opinions on the treatment center in dallas with the biofeedback treatment? Im desperate to get my old body back and no matter what i do, nothing works, someeone please help me out. Any advice would be greatly appreciated, bless all of you, thank you.
Dear Dr. Fischer,
My son was diagnosed at age 17 with POTS in 3/2010 by Dr. Stewart, and has since been seen by Dr. Grubb in 7/2010 at which time they additionally diagnosed him with Joint Hypermobility Syndrome. He was initially started on 0.1 mg of Fludrocortisone 2x/day, and added 20 mg Prozac 1x/day after seeing Dr. Grubb. He has steadily seen improvement, and is diligent about working out to recondition himself. He was able to attend college this year which was a major milestone considering he missed his entire Sophomore year in high school and then attended part time his Junior year, working up to full time Senior year. Although he has seen great improvement, his major complaint has always been gastrointestinal in nature (nausea, dry heaving, diarrhea along with terrible fatigue). He avoids the nausea by not eating in the morning, but still has great difficulty with diarrhea. In reading other responses I notice that checking the ferritin level might be helpful, would adding iron possibly help his diarrhea or is there something else you would recommend? I know that this does not happen to be one of the major complaints of patients, and that is why it took us so long to get a diagnosis. He is desperately trying to gain weight, as Dr. Stewart said that would help him most, but with the constant diarrhea it is a struggle. He is working full time this summer and it will be very difficult for us to make a trip out to Toledo or elsewhere. I would appreciate any insight you could lend. Thank you.
HI Janet, I have passed along your comments to Dr. Fischer for a possible repsonse. Thank you.
Hi Janet – Dr. Fischer’s response is below:
Congratulations to your son on his great progress so far. You have done well to find two doctors of such great quality to help in his care. Diarrhea, as you said, is less common than other gastrointestinal problems in POTS, but it can happen. Of course, your son’s doctors should have confirmed that there is no gluten sensitivity or lactose intolerance (or inflammatory bowel disease) complicating the POTS and contributing to the diarrhea. (I have, unfortunately, seen each of those other conditions concurrent with POTS.) If there is iron deficiency with a low ferritin level, then iron supplementation might indeed help some. Getting his weight normal and avoiding other medications that might trigger diarrhea can also help. Some patients do better with SSRIs (like Prozac) to help there intestinal symptoms, but your son is already trying that. Rarely, pyridostigmine is needed for POTS patients with bad diarrhea. I hope these comments help as your doctors sort out how to specifically help your son. –Phil Fischer
My 20-year old daughter is going to have a “work up” at Mayo in July. One doctor at CHOPS (whom she never saw, but is a friend of a friend, and was willing to review her records) suggested that she might have POTS. As she is being seen on the adult side of Mayo, will she be able to have a consult with Dr Fischer or someone else who is familiar with POTS?
She’s had chronic abdominal pain and nausea, intermittent headaches and diarrhea, lactose intolerance, auto antibody production, along with recurrent hives,anaphylaxis and neurocardiogenic syncope for over 6 years now – with only a diagnosis of IBS! She is desperate to feel better as she enters adulthood which is why we are turning to Mayo Clinic for answers.
I welcome your thoughts and ideas!
Kelli,
I also have a daughter who was diagnosed back in January 2010. She is a high school varsity athlete who aspires to play lacrosse in college. Tell your daughter that it is possible. My daughter Lara went through a rough time at first, but making sure she is drinking enough water, taking her salt tabs (thermotabs) and her florinef she is doing great. She played lacrosse all summer, which was the hottest summer Maryland has seen in some time. I believe the thing that helps her most is exercise. When she is not in season she seems to have symptoms. I would also encourage you to seek out a good child psychologist. Not a social worker, but a really good child psychologist. We put our daughter on zoloft for the depression and anxiety that POTS kids suffer with. It is so hard especially for girls who are so passionate and driven about their sports/dance. Our daughter was stuck for months, just because she was afraid she would never be the same again.
We see a Dr. Gerard Martin at Childrens National Medical Center in DC.
If your daughter wants to contact my daughter, she is on facebook. Lara Ringgold. She would love to chat.
My prayers go out to you and your daughter.
Thank you Leanne. I’m sure my daughter will add her. My daughter’s name is Kayla.I appreciate your reply. It helps to have somewhat of a support group for parents going through this as well. It’s so hard to watch our children have bad days like they do and nothing that we can really do about it but encourage them. I will take your advice on the child psychologist as well. My prayers go out to you and your daughter also. Have a Happy NEW Year
My 15 year old daughter was diagnosed with POTS this past November. She is also very athletic, outgoing, very social she was in cheer, tennis, and track, But this past weekend while conditioning for track felt very dizzy, and came home extremely fatigued . She came home and slept for 13 hrs she than had fainting spells the next day. She is on florinef.25mg and is drinking alot of water and eting alot of salt. She feels like she can not do anything because she is always out of breathe or dizzy, she is at times depressed because she does not think her body can take the exercise anymore, she is not the same outgoing teenager she once was. Breaks my heart.
Hello…I myself live in Florida and have POTS if you come to Naples Dr. Plunkett is familiar with it and treats it to his best ability…he will also refer to you Dr. Grubb in Ohio who is a specialist for further treatment. He is a lifesaver he had be functioning for the most part until recantly when I had anesthesia this past week but I am on the road to recovery again. I hope this helps. If you need anything my email is amzaino@gmail.com
Please tell her to stay calm, she will go back to normal. I am a 17 year old teenager very similar to your daughter. It is terrifying, but it get TONS better. I cried myself to sleep for nights because one, I felt awful and two, because I felt awful I was losing my friends, my boyfriend, and my social life. It’s embarrassing, sad, and seems so unfair. Get her to a doctor (mine is a cardiologist). They will prescribe her medicine, which makes a world of difference. Also, they understand what she is going through. It’s terrible to have nobody know what is going on with you. Just one doctor becomes a great support group. I still have bad days, even bad weeks, but overall it’s become manageable and I’m back to loving my life rather than constantly wishing I could go back in time to before I was sick. Also, be her mommy and try to stay calm. My mom has been amazing, and it makes us very irritable so it just makes it worse when a parent punishes us for talking back, etc. when it’s something we can’t control. Good luck!!!