Progressive POTS

[danelle]

Hi, does anyone know if POTS is progressive? I know that everyone is different and I used to have "up times and down times" but over the past1 1/2-2 yrs things have progressively gotten worse. Do some people with POTS have a progressive stage, and if so, where does it end???? By the way, I have had POTS for 18-19 yrs and I am now wondering if there isn't maybe an additional diagnosis of some kind. I have been tested for many things though .

[MomtoGiuliana]

Danelle

Are you experiencing menopause now? My specialist told me that he has been treating women with POTS long enough now to see that POTS can flare up again at menopause and then symptoms often improve again.

Oh, I just saw you are 37, so that is not likely. But, I also see that you were just diagnosed 2 months ago. It may be that you haven't found the right treatment yet, or there hasn't been enough time on the treatment to get symptom relief.

Katherine

[ethansmom]

I would tend to agree with Katherine, although I have heard of a few cases where it did slowly progress- generally during menopause. I think that we go through stages where we are worse, and then better again, that can last for a number of years. After so many years without a proper diagnosis, it may take you quite a while to become stable and get on the right track.

[Merrill]

Danelle, I'm like you, recently diagnosed but have had symptoms forever (since my teenage years and I'm 42). I agree w/earlier post--there are years of better health, years of worse. I've definitely been worse the last 18 months or so (which is what drove me to pursue a diagnosis, I suppose--maybe it's that way for you too?)

Perhaps it's the case that the things we now know to do for ourselves just take some time to work... or maybe it's just time that we need! No way to know for sure. But because I haven't always had the range of symptoms I now have--and because each day seems to be different from the next (some better, some worse)--I tend to think I'm not moving in a single (downhill) direction.

Hang in there, kiddo.

[Ernie]

Hi,

This is a touchy question. I think it depends on the etiology of the POTS. Mine is genetic and half my relatives have it. We get worst as we age. The doctors told us that we have the same life expectancy as the normal population but my brother died last month of aneurism-stroke.

I have had the symptoms since I was a child but up to 4 years ago I could function without medication. As long as I did not wait in lines as was OK.

I have been feeling presync (dizzy and nauseated) all my life and I thought that everybody was fainting regularly. I only found out last year that it was not normal.

I still have the hope that science will help us in some way.

Ernie

[Deb]

I have hope, too, that we'll there will be a breakthrough in the research. I've been wondering myself if POTS is progressive. I sure don't feel any better than I did eight months ago when my symptoms all got much worse.

That's interesting about menopause. I'm 47 so I could be starting menopause. That might be something to ask my doctor about.

[twobyfour99]

I posted a question about pots being progressive as well. That has been on my mind a lot lately. Being that the dr.s know so little about this I was wondering if they had any hard evidence as to whether or not it got worse with time.

Mine seems to be, but then again I was only officially dx'ed with this in Jan. so maybe I am just going through a period of the bad times. We'll see.

Are pots patients more prone to stroke/aneurism?

Frances

[michiganjan]

I have had POTS for at least 25 years. It has gotten much worse the last 10 years. I am far less able to do things than I was 10 years ago. So for me, it is getting worse as I age. I am now 57. I was 32 when I know for sure I had it. My 40s were quite good in spite of it. Late 50s have been very difficult.

Michigan Jan