POTS & OI

[potsmomfmy]

Has anyone gone from healthy, active, athletic, and energetic to complete exercise intolerance which results in syncope, even after just standing more than 5 minutes or walking more than 10 minutes? My daughter started with presyncope while lifting weights at the gym when she was in her early twenties. She also at that same instance, had increased heart rate and drop in blood pressure during sit/stand. The first episode began randomly (which was during exercise while fighting flu-like symptoms).

Life has not been the same since. Daily routine is extremely difficult because of the rapid fatigue onset after doing ANY activity. ANY arm movement still causes syncope. Her life has been modified; and there are now limitations placed on every facet of her physical being. Not something I'd wish upon anyone, especially a physically fit, formerly SUPER active, always smiling, young adult.

It took a while to get a diagnosis, there is still no answer regarding cause or prognosis. Medications are available to treat some of the symptoms. However, a cure has not been found. It seems imperative that ALL of the medical community needs to be advised of this syndrome, due to it's complexity and increasing presence.

How does a study of POTS and OI make headlines or at least get noticed to find root cause, track demographics, environment, symptoms and treatment throughout the world? It seems more and more people are being diagnosed each day for these same symptoms. Isn't it time to find out why this is happening?

I would like to survey those who have been affected by POTS and OI!

Has anyone been studied, tracked, or followed through their illness via a medical entity which collects data?

Has anyone been on a cruise, became ill, and months later started with bizzare symptoms?

Has anyone been tested for rare molds/fungus exposure or parasites?

Has anyone has a neuro work-up which found any part of the brain responsible for dysautonomia?

[Heiferly]

There is not one singular unified cause of POTS. They've already proven definitively that some cases are proven by norepinephrine transporter deficiency, some are due to autoimmune conditions such as autoimmune autonomic ganglionopathy or sjogren's, and some are due to mitochondrial disorders (genetic conditions), for example. Surely as time goes on, more definitive causes for this syndrome will be found; this is why it is important to distinguish between a syndrome and an actual disease process.

There is absolutely no evidence whatsoever to suggest that all POTS patients have a csf leak so I'm not sure what would lead you to think that.

[Ball123]

I think all POTS are caused by intracranial hypotension and a csf leak, but that's just me I guess..

[sonikaur]

HI. I am 21 years old and was diagnosed with Pots 2 years ago after having a very bad pregnancy which ended in miscarriage. I was also very very very active before being diagnosed...i was a gymnast for 14 years, worked out all the time...now i am so sedentary and underweight and nausea all the time. I have been on a cruise but was not sick after that. I have been tested for parasites but it came negative. I have nevr been studied. I have not had a neuro work up done. I remember always having a little faster heart rate but it never bothered me in my teens. I am on the drug midodrine and a beta-blocker.

It seems to me the trend here with developing POTS is in very active sports related teenagers....and after a very stressfull episode such as an illnes (Flu,Mono) or a miscarriage/pregnancy it comes about.

Hope this helps :)

[klm0624]

Research the VAGUS nerve (and Vasovagal Syncope).  The malfunction of this nerve causes many of these problems... When this nerve malfunctions, it tells your body to drop heart rate resulting in the presyncope/syncope symptoms (rapid heart rate, fatigue, lightheadedness, etc.)  The nerve runs from the brain stem around the heart into the abdomen, all related.  I had severe stomach discomfort (i.e. your mention of nausea) during my "episodes" which no doctor could explain.  I'm convinced it's related 100% to the Vagus nerve.  Look for forums on this, you will find dozens and dozens of people with the same symptoms coming to the same conclusion.  Very little info from the medical community...  For some people SSRI's (Zoloft, Celexa, etc.) can help... In my case, Celexa has helped but it's not for everyone.  Please research and discuss with your dr.    Good luck !

[evo123]

Maybe if you post a thread about trying to find a good doctor near to you , you may find one that is recommended and close by.  I am in the UK so am not 100% on location and drs in the states.  But there are a couple I know of within Florida:

Dr. Charles Randy Thompson
8550 University Parkway
Pensacola, FL 32514
850-969-7990

This doctor actually has POTS himself and I have heard good things about him.  He recently took part in a documetary about POTS too.

Dr. Sinan Gursoy
Dr. Stephan L Moore
Naples Interventional Cardiac Electrophysiology LLC
311 Tamiami Trl N Ste 201
Naples, FL 34102
[phone]


Hope this helps x

[fayeo]

I have had OI for 43 years, since I was 12 years old. A rapid growth spirt brought it on.  It remained undiagnosed for 41.5 years.  No doctor I went to could find anything wrong.  I received no treatment until the last year and a half. Now, the condition is much worse.  I am now having 60% of all of the symptoms of Hyperadregenic POTS.  Having gone to a few doctors that know very little about the condition, I am seriously frustrated.  I am now on my own, looking for someone that can help me in my area of Tampa/Clearwater, Florida.

[evo123]

Hiya and welcome!

I have had symptoms now for many years on and off but last year I literally went from functional to totally non functional and practicaly bedridden within hours.  I am not as severe but am still very unwell with this.

I know of several research items that have been done, and a couple in process, but I think these are mostly regarding the effects of POTS on different aspects, i.e. pregnancy, heart rate, gastro issues, etc - all of which are extremely important, but to my knowledge there are no wide scale collective research on causes etc in progress.  As there are several known causes studies must have been done, but in what context I am unsure, there may be members on here more knowledgeable on this who will hopefully see your post and can give you more information.  

I know Dr. Blair Grubb has been an important part in the research of POTS.  He has just been over here to the UK and spent time with the leading autonomic dysfunction specialists here, they actually gave talks at the STARS (http://www.stars.org.uk) (http://www.stars-us.org) patient day, which was very informative.  


These links may interest you:


http://www.americanautonomicsociety.org/

http://www.prweb.com/releases/2010/autonomic-disorders/prweb4651984.htm

http://dinet.org/research.htm

I hope your daughter is okay x Has a cause been lookedfo for her?  It is sadly common that once a dx has been given on his type of disorder a cause is not often looked for.  This saddens me!!  On a positive note my specialists have said that in approx 10 years time these disorders should be common knowledge within the medical field as things are 'happening' - whatever this means.  It may not b good for the immediate present but hopefully future patients will not suffer like us affected at the moment.

[pamiam321]

My 17yr old daughter is very athletic and for the past 12 mo.. has been battling POTS. She has been through a complete neuro work-up and we recently saw an endocrinologist.  None of them have a clue why she has these blackout spells.  she does have epstein-barr and was told 5 mo. ago she had mono with NO symptoms.  Has anyone been to Vanderbuilt.  It was recommend to travel to Mayo clinic but we live in Mississippi and was hoping there is someone closer who could help.

[sarah0683]

I am 27 yrs old, My symptons started with episodes for about 10yrs of tachycardia when over exerting myself. Then last year after I got off of a plane coming from New brunswick to Ontario my symptoms hit with a vengeance putting me in the hospital for a week. I had fainting episodes, fast heart rate and nausea when standing and now a year later still have not settled down, in fact, they are getting worse...So far I have had holter monitor, tilt table test, EP study and TONS of bloodwork done.

[patient915]

I am a 17 year old with POTS.  I have never been studied, tracked, or followed through my illness via a medical entity which collects data.  My symptoms all started with getting mono.  Before I got mono I was extremely active getting tons of exercise and then I wasn't getting any exercise for years.  Now I am finally starting to get exercise again (10 min a day on the recumbent bike)  I have not been tested for rare molds/fungus exposure, but I have had stool testing done for parasites which came back negative.  I have not had a neuro work-up which found any part of the brain responsible for dysautonomia.  Sorry my answers couldn't be more helpful.

[enzymelover]

I love your questions. You sound like a mom after my own heart.
My 14 year old son developed POTS-like symptoms (not formally diagnosed) and severe orthostatic intolerance almost 2 years ago. As a child, he was extremely active, with boundless energy and strength.
His medical story is a long one, but in short, he was found to have a pituitary tumor, which damaged the anterior portion of his pituitary gland, resulting in severe endocrine hormone deficiencies, which --  (and this part comes from my own research, his doctors didn't tell me this) - has led to significant metabolic abnormalities (I had Organic Acid tests done which show this), loss of glutathione, and severe oxidative stress.

Since many people develop pituitary tumors without developing OI, his doctors aren't sure whether or not there is another cause for all of his symptoms, or not. One doctor thinks he may have Ehlers-Danlos Syndrome, due to his hyperflexible joints, however I think this symptom is from connective tissue changes that result from Growth Hormone deficiency.  I suspect the tumor may have caused some hypothalamic damage (which would explain his symptoms), but his doctors have no evidence of this, so far. However, according to a pituitary textbook I read, the type of tumor my son had can cause autonomic dysfunction. From hypothalamus damage.

I have done much reading in the past year that explains why exercise makes the symptoms worse, why his blood vessels may be both over-dilated and over-constricted, and why this is such a complicated disorder to treat, and overcome.

There are many disorders that can lead to autonomic dysfunction. Please do not assume your daughter has a tumor! She had an infection before the onset of her OI. This is a very common scenario. You might be interested in reading the book  "Cellular Hypoxia and Neuro-Immune Fatigue" by David S. Bell, M.D.  (I bought it from Amazon)

My son still has severe OI, but I am praying all of his symptoms will improve when he begins Growth hormone and testosterone replacement. At least in my son's case, this does seem to be at the heart of it.

Is your daughter on a glutathione supplement, or other treatment for oxidative stress? This might help her get well.

Welcome to this community! You will find a lot of info and support here.
Enzy

[CHRISTYDRAKE]

My son was also very athletic before this.  He played select soccer year round and select baseball in the spring and fall.  He was constantly having to run in soccer.  He can no longer play any sports or even take PE in school.  

It took 3 years for the diagnosis because his was a slow progression of symptoms and severity.  After a 7 inch growth spurt is when his became a daily event of nausea/dizziness/abdominal pain.

Our family did participate in a study where everyone in the family had to complete a very lengthy questionairre.  They believe my son's is hereditary.  My daughter has very mild symptoms, fainted 3 times last year, occassional dizziness.  I fainted occassionally in my teens through early 20's.  For some reason, my son's is just worse than anyone else's.  (Plus we are all migraine sufferers).

My son is regaining some of his life back now.  He is attending school for 4 hours a day and his symptoms, even though they are still daily, are subsiding or become less severe earlier in the day.  It just took us a long time to find medications and proper doses to help him.

[mich333]

Hi,

My 16 year old son has been suffering with POTS for 3 years now. It took a year and a half to get a diagnosis as the medical community has no idea what is going on with this illness. I understand your frustration and would love to hear if there are studies going on. Vandebilt Is currently doing some studies and the NIH have conducted them in the past.Medications and exercise have NOT helped my son at all. He is in the same horrible condition he was when this nightmare began.

I wish you and your daughter luck and I hope she feels better quickly!

Michele