I Have A Question Re: Recovery

[DSM3KIDZ]

I know you have the best chance for a full recovery if this illness was brought on by viral or bacterial illness but I heard that if it happened spontaneously you have less chance for full recovery. Is this true and if it is does anyone know why?

I had alot of diahrea(?) and vomiting (only in the morning) and it esculated from there so I'm unsure if that would be considered viral (I pray) or if that's spontenous. I was also VERY stressed the night before I got sick so who knows..............I still pray it was viral so I can have a success story to share. (I know we all hope for the same thing)

Any thoughts on this?????

[MomtoGiuliana]

I don't believe mine is viral and yet I am greatly improved. I still have a few symptoms, and have made some behavioral/lifestyle/diet changes, but I basically lead a pretty normal life. I don't know that enough is known about POTS to make any definitive statements about improvement chances--however, my POTS doctor always says that MOST POTS patients improve with time and medications (although finding the right meds and dosages for an individual case can take awhile).

Katherine

[jdqm]

my aunts is under control, she has not fainted in over a year, and she says her symptoms have basically gone away. she is off the meds as well.

Joy

[MNsue]

I have had periods of complete remission. My illness did start with a viral infection. I don't know why it comes and goes, but it does. I also have a lot of autoimmune issues, and I think that must be why it has not left completely.

Good Luck.

Rhonda

[cmtaylor5]

I don't believe mine is a result of a viral illness. I live a normal life with a few limitations. I was symptomatic for at least 7 years before dx, and pretty much disabled for 6 months prior to dx. With proper medications, I'm satisfied with my quality of life. I think you can get better even if yours was not brought on by a viral illness.

Carolyn

[Eillyre]

Dear DSM3KIDZ,

My POTS very much came "out of the blue" and was very disabling, but it now has little impact on my quality of life as long as I use medication and precautions to prevent symptom flares (e.g. staying out of heat in summer, drinking plenty of liquids, high sodium intake). I was told that full recovery tends to occur in cases that began with viral illnesses, but that most POTS patients (including those not on the forum ) will experience some measure of improvement regardless of how their illness began. Apparently it's a very small percentage that see no improvement at all.

I didn't bother to worry about whether I would recover fully or not since mine appeared seemingly spontaneously; I already had enough drains on my miniscule energy supply without adding that! I've just done what I could to encourage improvement and been thankful for each step forward. Try not to stress about how it started. I consider myself to be a "success story" even though I'm not completely "cured"!

Hoping that you'll soon see improvements on your end,

Angela

[Poohbear]

I have been diagnosed with various forms of Dysautonomia for around 10 years now. Initially I was told most POTS patients improve and in fact, I was told that all the way up to about a year ago.

Over time I have slowly gotten worse and very little has helped me attain a greater quality of life.

I recently questioned some of the "experts" in the field about this, referred them to the old journal articles that discuss improvement in most patients and I asked if they still believe that to be true or if, after researching a larger number of us they have changed their minds. At the time the journal article was published stating most improve they hadn't actually studied very many people.

The answer I got was that #1 They defined improvement to be ANY change for the better but that does not equate to improved quality of life or function as a "normal" person (ie.. hold down a job) and #2 He said they now realize that at least the people they see in the research clinics, (Mayo & Vanderbilt) they do not see major improvements in that group of people (generally speaking).

We did discuss the fact that this is still somewhat scewed data because the people who go to these facilities and are accepted are generally the ones who are more impaired. They don't take the folks who are too ill to be off meds so you have to keep that in mind as well.

I was reminded that there are probably many reasons why people get these syndromes and that each specific reason probably has a different outcome.

With what they currently know, it seems those with a viral form do still have the greatest chance of "most improvement" those of us with genetic reasons do not have great improvement (although still may have some).