Does anyone know of a POTS person who recovered?

[dianaD]

Hi everyone,

this forum is wonderful for help, news and support. But I do wonder why no one on this forum seems to have recovered.

Can we all make a pact? If we get better or recover, we promise to go to the forum and tell everyone?

Does anyone here know of anyone who has recovered from POTS (I have viral-induced hyperadrenergic POTS, and am especially interested in recovery from that!)? I've read the stories in the introduction of this web-site, and they were'nt exactly uplifting. Any GOOD stories out there? I would think if you recover from this, you'd want to shout it from the mountain tops and encourage as many people as possible.

The doctors say you "should improve". But I wonder if they are just saying that, because "I've never known a patient to fully recover" doesn't come off so well...

Thanks!

Diana

[shelby]

Hi Diana~

I think that the reason that we don't have a lot on recovery is that there isn't a full recovery in this case. I know of a lot of people who have gotten better, but still have their bad days. I am one of them.

A year ago I just started to feel better after getting on the right drug combination at Mayo in Rochester. I went back to school full time and finished one complete year without having to quit. I got my license back and knock on wood haven't had any fainting episodes in over a year and two months.

I had a fast track class (one class, six days, eight hours a day) this past week and had problems around day three. I just didn't get enough sleep going to class for eight hours and doing three to four hours of homework a night. I think that I just wore myself out and I am paying for it now. I have been resting for the past week to recooperate.

I consider myself better but not cured. I still have problems from time to time, but I am way better off then I was a year ago. Hope this gives you some hope in the future.

Shelby

[yogini]

This is a tough topic, which has been discussed a lot in the past. Here are some of the links to the prior discussions.

http://dinet.ipbhost.com/index.php?showtopic=894&hl=recover

http://dinet.ipbhost.com/index.php?showtopic=388

http://dinet.ipbhost.com/index.php?showtopic=2229&hl=recover

Before I was diagnosed, a relative who is a cardiologist told me about POTS and said that many of the patients he sees get better within a year or two. He hadn't examined me and would have had no reason to string me along. So I do think think that lots of people do get better (and many of them might never have been serious enough to come to forums like this in the first place).

Many people on this board have seen improvement and are pretty functional- I am one of them, at least for the time being. There also people that got better for a few years, only to get sick again, so there is always that possibility. I think that it depends in part on how you got POTS and also whether you have any other medical conditions. It seems that lots of folks on this board have other conditions such as EDS, fibromyalgia, GI issues, Lyme disease, etc.

Nina/Michelle, I was wondering whether it might be helpful to add this as a pinned topic if it isn't already included? Admittedly it's hard to read it each time it comes up...

-Rita

[MightyMouse]

Michelle, the site owner, is recovered. Please see the personal stories section of the primary dinet site for more information.

Nina

[Sunfish]

diana -

i hear what you're saying & think it's a good point/reminder for folks to remember to share the good with the bad. there can be a tendency for people to "disappear" when doing better, though i have noticed it less on this board than on others i've participated in. i know i was guilty of just that when i had a good amount of time symptom & med free(on another board)...i still was a heavy drinking & salt-intaker, but this was pretty second nature & not a hassle at all.

i do know of a good number of people who have problems in adolescence & then "outgrow" them entirely as they enter adulthood. and like already mentioned, there are many who are not necessarily 100% but who are pretty darn good. to me that's encouraging in and of itself. perhaps more so for those of us who have underlying issues that we know contribute if not cause the autonomic issues, as total recovery may not be as realistic & thus may seem like pie in the sky. for me it's just as exciting to read of folks who have taken great strides despite still dealing with some aspect of things.

i think we all realize though that there is a LOT that no one understands with these disorders...including the recovery aspect. if anyone discovers all of the magic answers don't forget to let us know!

:-)melissa

[ethansmom]

I agree with the previous post- many people improve- some drastically, but very few actually recover to the point that they are completely POTS free forever. However, I think we should be encouraged by these improvements, as they are a sign that things can and do get better. I was completely non-functional at first, but I am now leading a fairly normal life at about 90% functional. I am chronically fatigued but otherwise I run a household and have two small children to care for- and there hasn't really been a day since they were born that I haven't been able to physically do it if I had to!! I am very active with community stuff and even though there are days when I feel totally awful, I have to say I love being this way compared to being bedridden and depressed each and every day.

Definitely read through some of the stories- it will help you see the varying degrees of recovery that people have experienced

[persephone]

I was told people who get pots postvirally have the best chance of a spontaneous recovery.

I've established that my pots is cyclical--I can go for 3 months and be fine, then it kicks in.

So I'm kind of better but not fully cured?

[lindaf]

Dear Diana, My niece has made almost a full recovery in the last two months. She was almost completely bedridden for 9 months(she was also pregnant). She had contacted salmenella D and was extremely sick. She still gets tired, but is also taking care of an infant and two young daughters. The Pots set in because of the salmenella. We were at her nephew's graduation party last week and she didn't sit down for hours. I felt such joy seeing her like this after what she had gone through. I would say that she has about made it out of POTS. A few months ago, she couldn't do anything. Now she is driving, running a house and children and very busy socially. She is also planning on going back to work in September(she is a lawyer). I think you have a very good chance of a full recovery since yours was caused by a virus. Good luck! Linda

[Kitsakatsa]

I'm entering into a remission. I was diagnosed with Florid Pots in Feb 04, had a 2 week remission in Oct 04 and March 05, now am in a remission that has lasted 3 weeks. I'm one of the virals. I have hope that this remission will last a long time. I still have symptoms, but they are far more manageable and life is normal as long as I'm careful. I'm keeping my fingers crossed!

[Michelle Sawicki]

For those of you who have emailed me asking how I recovered, let me elaborate here....

I am not "recovered" in the sense that I am perfectly healthy. I still take medication every day and I still have bad days along with the good. I think Nina meant that I am doing much better now than when I first got sick.

Michelle

[MomtoGiuliana]

I am definitely not recovered completely, but greatly improved. I still have flare-ups and odd symptoms, but I can live a fairly normal life. I take a small dose of an SSRI.

Just returned to Maryland from Colorado with my 2-year old! The plane trip was fine. I was only mildly symptomatic. I made sure to stay well-hydrated. I did have trouble when we attempted to drive up Mt Evans one day last week. Once we got to 13,000 feet the altitude gave me problems--headache and nausea that could not be mitigated with any amount of fluid intake. But, I did hike at 8,000 ft with no problems. I am on a bit of a downward spiral since returning home--it started the last day of our visit. But, I suspect it is related to all the activity and the changes in altitude, the dryness, etc.

Katherine

[HoldOnToHope]

These are encouraging words. Can we keep this going?

[Jenn202]

From last year until now my POTS symptoms have improved quite a bit. I upped my treatment for Lyme Disease, and I think I have that to thank for it.

I still have not so good days, but nothing where I cannot function.... and I do not have trouble with standing long periods of things of that nature..... So I feel fortunate to be ok for now..... and I hope that I will at least conitnue on this level or possibly better.

[India]

The cause of my POTS is unknown, although I suspect I have had it most of my life based on recollections from childhood. However, after trying midodrine, paxil and other drugs to no or worse effect, I was put on Florinef two months ago. Despite my misgivings about this drug (see my earlier "freaked out" post!) I am feeling so much better. I have been "upright" for two months now and feel much stronger in general. I have "potsy" moments, but nothing near as awful as before: in June I couldn't get out of bed some days because of the awful dizziness when I was even moderately upright. I know florinef does not work for everyone, but (fingers crossed) thus far I am one of the lucky ones.

So, for now, I feel sufficiently improved that I can say that if I am not totally recovered, I am feeling better than I have done in years. And this is a big victory for me.

I like this thread. We need to share and spread some hope, however small the package is that it comes in!

Aloha,

India

[Sunfish]

it's always good to hear the "good stuff"

thanks for posting gals!

melissa

p.s. india i'm so glad that your florinef experience has been so positive & that your fears didnt' come to pass!

[Eillyre]

I've not recovered fully, but the POTS end of things is pretty well controlled on mestinon -- flairs up when CFS gets bad.

The electrophysiologist I saw at UPenn said that he had some POTS patients who had a full recovery (of course, I never met them!), as well as some that were leading normal lives on medication.

Angela

[Evie]

Im feeling better and better ... i still have my downs but i recover alot quicker than i use to. I have not fainted since early august. I have had a month where i have only felt spaced out about 30% of the time opposed to 70%. I have not had to have extentions on assesments. I ran to the car the other day... big WOW moment for me. Its not like i am playing sport yet or anything .. but still big improvements

Im really excited The last 3 months have been the biggest step forward i have had in 5 years. I hope it continues, still dont want to get my hopes up too high though. I realise others have had a year or so without trouble then its returned ... however i still just wanted to add a bright note.

[bbdeezy]

I was diagnosed in Jan 03 after having off and on symptomatic days all my life and had been told " I was Lazy" all through my teen years. I was symptomatic for 9 months starting in Aug 02 and in dec 03 I returned to work after being off a yr. Then 8 months into the Bank teller job and became symptomatic once again. So it is off and on with me.I have been home over a year now and still symptomatic. Dr In Cleveland when diagnosed said he believed I was born with this problem. I do not pass out as frequently now that I am not driving and know to NOT look up or down or turn and look off to the sides. ( i do forget at times and i pay for it the next day)...but I also have Hypersomnia, sleep apnea, RLS, so it could also be attributed to these problems as welll......I hope and pray better days are ahead but not relly counting on it.

[carlacat]

I have had Pots since 2001 and have to say it has gotton better. I do take a beta blocker and wear compression hose, have tried alot of other meds but I'm very sensitive to meds and alot of them just dont work for me. I went from not being able to stand for more then a half hour to walking three miles a day. I find that the worst times for me when my pots does want to remind me its there is "that womanly time of the month" and for some reason it kicks me in the butt and I have to load up on my salt intake.

The last visit to the cardo, he said my blood pressure levels were more evenly when laying down and setting up so that set my mind that I'm gonna kick this thing and I keep telling myself that everyday when I wake up.

Carlacat

[hockeykid]

When my grandmother was telling a bunch of her friends about my condition etc. she talked to a guy and he said, "Oh, I know what that is, I had it when I was younger." So apparently he is fully recovered and doing fine. There is hope!