Comments on: Mayo Clinic Study Identifies POTS Treatments

By: Sandra Aft

Sandra Aft — Sun, 12 Feb 2012 19:02:20 +0000

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.

By: mayoclinic

mayoclinic — Fri, 10 Feb 2012 14:48:35 +0000

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

By: mayoclinic

mayoclinic — Thu, 09 Feb 2012 14:59:16 +0000

We are checking into a reply to your question.

By: Sandra aft

Sandra aft — Thu, 09 Feb 2012 14:49:32 +0000

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.

By: mayoclinic

mayoclinic — Wed, 08 Feb 2012 14:48:11 +0000

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

By: mayoclinic

mayoclinic — Tue, 07 Feb 2012 14:15:05 +0000

Thank you for your comment. We have referred it to our POTS expert for a response.

By: Caprice

Caprice — Tue, 07 Feb 2012 02:41:21 +0000

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

By: mayoclinic

mayoclinic — Wed, 01 Feb 2012 14:37:50 +0000

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

By: Anita

Anita — Mon, 30 Jan 2012 23:34:07 +0000

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?

By: mayoclinic

mayoclinic — Tue, 24 Jan 2012 16:59:25 +0000

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