cause of POTS?????

[denabob]

Ok , I'm very new at this and my doctor can't seem to give me a definite answer. I'm very curious to see what you guys feel caused this. I'm not looking for some profound wisdom just a good guess! I'm 30 and otherwise healthy the first time I ever passed out was due to low blood-pressure during pregnancy 4 yrs ago then I got dizziness that wouldn't subside about two yrs ago I then went through all the tests and list of specialists who just shipped me from one to the other ( like alot of you know ) My doc says a viral infection usually causes it but I cant trace it back to that! any good guess would be appreciated I think the more informed we are the more we can help others Doctors included!!!

[justme]

My wife also noticed her symptoms during one of her pregnancies. Even though she has been diagnosed, no cause was ever given. I would be interested to know if others have actually been given a cause.

[Louby]

I've never been told why this happened... I have been told they don't at the moment really understand enough about POTS to determine where it comes from.

What i have read and heard, has led me to believe some people find it happens after illness, others can never put their fingers on exactly when it started so it is impossible to contribute a cause.

One possible reason I was given, was that it is genetic, passed from mother to daughter. I have spoken with the women within my family, and they certainly seem to have a lot of similar symptoms. My professor is very interested in exploring this possible route, and is hoping to look into the other ladies within my family.

Perhaps the most interesting link is that between my mother and her older sister, they have both had similar experiences throughout their life times. Both have very low blood pressure, and during pregnancy both had many POTS like symptoms, both have been fine ever since - although my mother of late has been suffering with so many POTS like symptoms it does very much concern me (she is now 53).

My cousin, has had similar problems to me, thankful not as severe. She was told, by pure confidence to avoid all the things people with POTS should avoid - lucky for her she is now fine, and reports no problems, maybe she doesn't have POTS but is certainly sounds similar.

[MomtoGiuliana]

Genetics seems to play a role. My POTS doctor told me he has seen a genetic tendency, especially mothers and daughters both having it. Also spinal injury or malformation. There is so much that isn't known or understood. There are probably multiple causes, most of which we have no control over!

[Jackie]

This is a big question for me too, since it seems many things can cause POTS, wouldn't it seem to help in treatment if they could look for the things specifically they know that does cause it (like the catecholamine transport thing...how do they test for that?). I realize people develop symptoms sometimes without an apparent link to a virus, etc., but at least they could look at the known things and that should lead to a more definitive plan of treatment I would think than just "yes, you have it, and let's start trying this and that" I don't know if that makes sense or not.

Anyway, an interesting note about genetics...it definitely runs in my family in varying forms as various relatives pass out (NCS)...evidently I have the other end of the spectrum (POTS).

Kind of a funny thing to look back on now, but when I was first seen by Dr. Grubb, I was so ill and not to sound so dramatic but I felt like I was dying. I even asked him straight out, crying, and he said "I don't know". (At the time he was concerned about carcinoid syndrome because of my presentation with daily diarrhea, etc.) Anyway, I was like a rag doll lying on his table zoned out on Ativan and crying. He said "you look like somebody who has POTS" or something to that effect and I thought "what...somebody who is dying?!" and don't remember what I said and he responded "fair complected, light eyes, light-colored hair". So interestingly, I am curious to know how many people here are fair-complected, etc. He made it seem that it is somewhat more predominant in people that look this way (I am scott, irish, german).

[Guest tearose]

The medical "best guess" is that after going nine months with untreated Lyme disease and then finally having intense IV rocephine to get rid of the Lyme, my POTS is considered secondary damage caused by the Lyme. I gave up trying to figure out how I got this and decided to focus on how to live with/inspite of it. Hope this helps. tearose

[denabob]

Thanks so much for all the input! And as far as similarity goes I'm also light complected with blonde hair and hazel eyes. I suppose I'm more NCS with POTS because I do pass out and my mother does share alot of symptoms and my doc actually wanted to test her until he found out that she has arrithmia and COPD which complicates things a great deal. The symptoms are very similar and she wouldn't be able to take most of the pots meds due to her lungs. I've heard alot of my family blame light-headedness on low blood sugar even though they haven't been tested. My symptoms are the same as low sugar but my sugar levels are normal. I suppose they could have a milder form of pots and not know it. Since this illness is usually discovered after all other options have been exhausted I guess we may never know for sure what causes it being able to live with it will have to be good enough. Curiosity isn't something I've ever been able to ignore so put me in the category of "inquiring minds want to know"

THANKS AGAIN!!

[Jackie]

Oh my, believe me....I've never had patience with understanding and that has been my biggest problem with this.

If I can understand something, if it makes sense, then I can deal with it because my brain accepts it or something....but things that don't make sense and that nobody knows what to do about...hmmm, that is a different thing and what causes the "worries" for me I think.

Interesting about the light-complection, light eyes/hair thing huh? Everybody in my family who suffers from autonomic problems is for the most part (except nephew and sister and her son with brown hair and red hair respectively, but hey those old recessive genes from my mother's side of the family are hiding in there somewhere...all blonds, all light eyes and hair on her side where it appears it comes from because nobody in my father's side has it!)

[Jackie]

I have another question with regard to diagnoses. Say, for people who later found it was Chiari malformation or Ehlers Danlos syndrome, etc., how were you screened for that? That is my point anyway....I want to find a doctor who will rule out known causes so at least we will know that much (i.e. so I don't find out later it was the car accident and blow to the head that did it...couldn't they do a brain and spinal cord MRI or something?) Do any of you see doctors who have run tests this in depth looking for a cause? (or was everybody diagnosed by tilt table only and later stumbled upon other underlying cause?)

[futurehope]

My neurologist only became interested in underlying reasons (and ruling out possible causes of POTS) when I mentioned it myself. I said, "I'm going to my endocrinologist. What tests do you think she could do to rule out causes of POTS?"

As it turned out, my endocrinologist took one look at the list of 9 tests that my neurologist had suggested, and decided I should do maybe 3 of them, my usual tests for level of thyroid hormone and a test for pheochromocytoma - a kind of adrenal abnormality in which large amounts of epinephrine are pumped into your blood. She really doesn't think I have that, though.

Really, my neurologist should be doing the tests himself to rule things out. Why am I telling HIM that that's what I want?!? It could be that there are so many DIFFERENT organ systems that could be malfunctioning and causing POTS that really the neurologist does not, and cannot, have all the knowledge required to determine the possible causes. I guess that leaves it up to me, and reading, reading, reading, through this forum and everywhere else to figure out what MY underlying cause might be.

Also, when I have my NIH study completed, I'll have a clearer picture of which parts or systems of my body are malfunctioning. Until then, I tell myself that people often get things like chronic fatigue, fibromyalgia, multiple sclerosis, lupis, etc. and don't have the foggiest idea WHY they got it. Though, if physicians can find an underlying cause to our dysautonomia, it COULD help determine our treatment plan. Remember, some people on this forum have improved quite a bit even though they never knew what brought on their dysautonomia.

[lalalisa]

For me it was mono (epstein barr virus). I was a healthy college student who was running 3-5 miles a day....I got mono and then POTS and now I'm basically homebound.

It's interesting to me how many causes there seem to be,

Lisa

[scamelo]

This is all very interesting. I am not aware of anyone in my family having POTS and I got my first symptoms ( in Ohio) without getting any viruses that I know of.

However I do know that in the 5 years mom lived with us before her stroke, my mom did faint twice, for no apparent reason. Went to ER and they found nothing. that is not a lot in 5 years, and she has always had HIGH Blood Pressure, never low and no other symptoms that I know of, but who knows.

We are both fair complected. I have blue eyes and very light skin.

I have a friend at church who is an emergency Room Dr. She told me that when she was doing her residency she had a patient who had POTS. She researched it some and found that people of Jewish acentry had it more that others or it was more common. Not sure if this is true or not, many people don't know this is in their background ( like John Kerry for example). It was just a curious statement.

Silvia

[Dawg Tired]

I am blonde/blue eyes/fair complexion. All my life I can look back and see symptoms - hindsight IS 20/20! But the first time I felt something was wrong I went to the doctor and he told me I had a virus - and would be okay in about 10 days. That was 2 years ago. My great-grandmother had symptoms that sound exactly like mine and she was just considered "in delicate health". She died at 53. Both of my parents have pacemakers due to arrythmias, both of my sisters are on meds for arrythmias. I have had a pacemaker for a year and have had no improvement. At the time I was dx with the virus I was walking 2 miles a day, working full-time+ and going to college at night - carrying a full class load. When my TTT was + I thought I would find answers - it didn't happen. I don't know what I would have done different in the last couple years, but I am sure glad I have such a wonderful support system in my hubbie and here on this board!

[denabob]

Wow! This turned into a real interesting subject! Maybe by comparing ourselves to each other we can do more good than our doctors. I have had MRI scan of my brain mainly to rule out MS but the only thing strange was a unidentified white patch ( evidently not even worth mentioning because my Dr didnt tell me .. my lawyer for soc sec told me - that's a whole different story though )and I have been tested for addisons disease , have had all the thyroid scans , blood sugar tests ,echo cardiograms , ekg , ecg, tilt table , sweat test , standing test ,percent body fat calculation , metabolism test , amount of oxygen used for muscle useage ,stairmaster and treadmill testing (with and without med.)Yeah, I know I've been a guinea pig but finding help is worth it! I'll still request more if anything would help figure it out. The only thing they have come up with is POTS with NCS and some deconditioning of my body (no duh!) I wasnt deconditioned when I got sick I was walking 10 miles a day (5hrs) 5 days a week(USPS) so there went the theory of deconditioning being a cause or trigger. I know, I'm rambling on but thanks for letting me! It's nice to vent!

[RunnerGirl]

Wondered if you all had seen this article, which discusses some theories as to the causes of dysautonomia:

http://heartdisease.about.com/cs/womensiss...ysautonomia.htm

Has anyone else heard of the link between ANS dysfunction and breast implants? I'm well aware of studies showing links between silicone gel implants and certain connective tissue and autoimmune disorders (ie, SLE, RA, etc.) but this is the first time I've seen a reference to implants and dysautonmia.

I've had saline implants since 1998. Onset of my symptoms was about a year and a half ago, some four years after my surgery. If I thought my erratic HR and BP, and other unexplained symptoms - anxiety, night sweats, insomnia, etc. - could be fixed with explantation, I'd have the surgery tomorrow. Sad to think that a fit of vanity could have cost me my long term health...

I know it's a rather personal subject, but I'm wondering if any other women here have (or had) implants. If you're comfortable writing about it, I would be grateful to hear your story...

[scamelo]

No implants here, if anything I always wanted to be a bit smaller, no relation in my case

[Jackie]

Denabob - you mention a white patch on your scan....was it described as a plaque? My sister has MS and not to scare you but this is what they look for...i.e. plaques on the brain. Just curious.

[Jackie]

No implants her either but I'm not surprised that it might be a trigger since immune system seems to play a role in this stuff too much of the time with viruses and allergies, etc. I think it makes sense that your body had some kind of autoimmune response to the implants that set off your body. Keep us posted.

[denabob]

Actually I wanst told what it was but that MS was definitely ruled out and I had that confirmed by 2 neurologists. Curiosity strikes again! This is a real strange disorder and uninformed docs dont help much! Also no implants but I can also see how it could cause a problem there just isnt a good way to know.