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.
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,
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.
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!!!
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.
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
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?
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.
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)
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.
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
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
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.
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
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