Post-viral Triggered Pots

[iheartcats]

There's so much flu hype right now, and I never hear about post-viral problems that can come with a virus.

I'd never even heard of POTS (related issues) until I was blessed with it. I'd consider myself somewhat informed and the only long-term thing I'd heard of was Lyme Disease.

If people knew things like POTS could happened from viruses maybe more people would get diagnosed, more research would go into it, and we'd be more understood.

Do you guys think it takes a 'worse than usual' flu to trigger POTS? I know that's what I had before my POTS symptoms really flared a couple months later. The reports I'm hearing of most people with the Swine Flu aren't as bad as what I dealt with during that flu. I never went to the hospital, I was told to rest and stay hydrated and try to eat. Which I did...but who knew it'd lead to damage to my ANS. Was there any way to prevent that?

[erik]

Good point. It seems like some research could be piggybacking on the H1N1 ongoing research/monitoring too... maybe hoping to find potential contributing factors, associated conditions or whatever might or might not be linked to post-viral stuff like POTS or ME... maybe eventually springing vague clues about prevention if it can be done.

I have multiple points in time that I can speculate were the beginning of my POTS related symptoms, but two of them did involve extra bad or extra long lasting cold/flu illness... or another involves physical injury (preceded my first faint by half a year). Count me as a half-pots (or crack-pots) vote for "yes, it seems like an extra bad illness period was involved".

[mountain girl]

Yes, good point. I cannot specifically tie my pots to post viral infection, although I did have sinusitis 3 times between 12/08 and 6/08 when I started with symptoms. I had just started a full time night shift job and that is originally what I blamed my extreme fatique on and then very soon after started with the tachy episodes and feeling like I would pass out. By July 1 I stopped working nights but of course the symptoms continued. I had never heard of pots before either and had been working in the medical field for about 25 years. The whole thing is jut so wierd. A doctor friend whose wife has CFS and was somewhat knowledgeable about pots said his opinion was the virus thing is a theory and we do not really know for sure what the cause is. I know from someone I met with pots who has a dr in the family that there are ongoing research studies on pots, but it never seems to make news. Since pots seems to be so unknown and it is so hard to find drs who understand how to treat it, I wonder how they ever get enough data for research.

[potsgirl]

I first started getting really sick after a bout with 'Valley Fever', which is a virus that can hit newcomers to the southwest. It's in the soil makeup, and it's a pretty nasty, usually long-lasting virus. So, I'd say my dysautonomia, and possibly heart problems, was related to that virus.

Cheers,

Jana

[iheartcats]

I hope someone is monitoring this big flu season, then - will there be an upswing in Dysautonomia cases? I just wish it'd get more exposure. I would think there are a lot of people suffering undiagnosed like many of us did!

Plus, the more research and input, the more chance everyone has of a 'cure' or at least something that will help heal us.

I didn't notice major, disabling symptoms until that flu. So that's why I really think it was what pushed me over. Even if you're pre-disposed doesn't mean you'll get something for sure (think of the cancer genes, etc).

And if it is some type of damage...so much of the human body can heal. Guess we just keep hoping.

[Angelika_23]

Mine probably came from viral meningitis. And my symptoms were hit and miss for several years until they came to stay in 2007. So I don't know if I had a second trigger in 2007, or it was just taking its time working up to the big crash.

[Sophia3]

80% get ANS stuff post viral.

20% are born with it. Many born with it get worse from triggers that don't always make sense. Looking at my child hood for SURE I was born with my issues...got sick as a kid on park rides/car rides/crippling shyness (like perpetual stage fright-ANS disorder) Had difficulty making friends until I was in Jr high school....could not play wind instruments including harmonica, could not blow up balloons without headache/dizzieness etc. would vomit when I got upset in those days, too. Now I just lose my appetite instead or when UPRIGHT too long..

there are cases of Post Polio virus causing problems in people. so post viral issues have been around...what's caused POTS we don't 'know...been around FOREVER just could not test for it...Civil war days called it Irritable Heart and other things . . .