Recovery - does it ever happen?

[Suzanne]

Just wondering if anyone ever recovers from POTS? I know some of the posters here are like me, at home and sick, but does it ever actually get better? Or do you just manage it?

I have been speaking to CFIDS sufferers, and eventually, most of them recover and lead relatively normal lives. What about us? I am feeling a bit despondent.

[Evie]

I was originally stuck in bed with CFS and that was a really tough 4 years with feeling REALLY ill each day(i had undiagnosed POTS). Now i can run for buses and things like that, i still have tough months where i am in a fair amount of pain or times when im quite dizzy but i am still amazed when i can run for a bus.

So basically i would say that it can get alot bettter.... compaired to being stuck in bed anyway.

Btw i found out about a dr in sydney who aparantly did studies on POTS .. his name is Dr Whaley. I dont know anything about him other than that but maybe you could look him up if you were still interested in docs in sydney

[Sunfish]

hi suzanne -

does it EVER happen? DEFINITELY. does it always happen? no. but is it an all or nothing thing? no on that one too. there are SO many variables, differences, etc. many do improve some over time. some stay relatively the same. some have ups and downs that vary in degree & length. some get worse.

research isn't definitive on the issue but seems to indicate that most see some improvement but some do not. of course "some improvement" can mean anything from someone going from bedridden to able to be up & about in his/her house with a trip or two out a week but still very incapacited to someone getting back to the full level of functioning s/he had prior to illness. and of course everything in between.

i will say though that when people are tending to do better/best they don't often frequent the support sites &/or post nearly as much so the people that you'll "see" more often here aren't necessarily generalizable to the dysautonomia population as a whole.

so....unfortunately there is no certain answer. for some individuals docs can make better guesses for various reasons due to etiology, history, some testing, etc. so it may be something to discuss with your doc. but that said for most there are not definitive indicators/predictors. and even the top docs can be wrong.

hang in there,

melissa

[Guest tearose]

Recovery?

I don't know anyone here who "got all better".

I think it is that we learn how to manage, we have times, days, months or years of some symptoms and then things can change.

I was bedridden, used a walker, used a heart rate monitor, used compression, moved to a totally handicapped equipped ranch and then on a "new" suggestion from my always hopeful pcp began magnesium/potassium/calcium supplements, for my cognitive problems I also began training my non-dominant hand, did puzzles and listened to music....and about three months later...it was unbelievable how different I felt! I am able to do more and sustain more however it is a "fragile balance" I must do a little and rest a little. But I manage with my compression, and a seat cane and careful attention to supplements and electrolytes. I consider myself doing better but not "over it" or "recovered"

...but I still have hope....

best wishes, tearose

[Ernie]

HI,

Mine is genetic so there is no cure. I can only hope for improvement.

[MomtoGiuliana]

I guess mine has a genetic component since one sister also has it.

I was bedridden and am now quite active. I still take a low dose SSRI that helps a lot. Exercise helps tremendously as well. My sister is also doing really well with a low dose SSRI.

Katherine

[gdomaracki]

I Wonder The Same Thing Ever Day. . .

[Wufflebear]

I dont know if it goes away completely but I doubt it. I think it can lesson substantially at times, kind of like being in remission...where the symptoms are tolerable...Plus we learn to deal with them and that makes life easier. I have been bed ridden in my life but I am no longer that way...so it can/does get better.

[Jacquie802]

Hi, my cardio told me that I will go through periods where I am better, then a virus or a cold, etc. could set me off to get sick.

Jacquie

[Dizzy Dame]

Dr. Biaggioni at Vanderbilt told me that 80% of POTS patients improve over time (but this includes ANY improvement, and does not necessarily mean recovery). He also said that improvement depends upon the two-pronged approach of medication and exercise.

I have improved slightly since I got sick. I used to be bedridden, and now I can go to class twice a week, and often don't need to stay in bed when I'm at home, however I still need a wheelchair when I leave the house, and even with my meds, I can't be upright (standing or walking) for more than ten minutes without passing out.

There are those who recover much more, and lead normal lives. It just depends on so many things.

Hope you feel better,

Lauren

[Suzanne]

Thanks everyone. I do feel better! Recovery is very subjective and I can see from your stories that some of you have recovered - from where you were - but maybe not to where you want to go.

I have decided to aim for recovery - in small steps. Any improvement is a cause for celebration. I also need to be realistic about having seasons of being well or less active too. So this has helped me.