Is Pots Progressive

[ramakentesh]

Ive read all the websites with info on POTS and they generally say that POTS isnt progressive and that most patients experience an improvement. For me its been bouts and ok health in between. My doctor said that this is pretty much the norm for POTS patients that he has been treating.

But ive read here that some patients gradually get worse and this concerns me.

[momofsara]

From a personal standpoint, Sara has been told her dysautonomia is progressive. She has several aspects of dysautonomia, including pots. So, I dont know if it makes a difference if you have more than one of the conditions under the heading of dysautonomia--- Sometimes, I think the more I know about this thing, the more confused I get Anyway, thats what we've been told..for what its worth.

Susan

[Katja]

my grandmother, who was diagnosed with ANS dysfunction in her 30's, developed symptoms in her late 20's, after her first pregnancy. eventually her symptoms got better, then returned, much worse, after her 2nd pregnancy (she was diagnosed a few years later). after that they would tend to come and go, get much worse, get better, whatever. she had severe episodes of tachycardia, along with other symptoms, as well as fatigue. when she hit menopause, she suddenly improved dramatically. she still has constant problems with fatigue and has difficulty being upright, but it's not nearly as bad as it was in her youth. I doubt there's any way of predicting what's going to happen in any individual case, though there seem to be some trends (I seem to recall that people are more likely to recover from post-viral or 'pediatric' POTS).

[Ernie]

Hi,

In my family we seem to get worse as we age.

[willows]

Hello .

I dont know about anyone else who has POTS but as far as I can see , feel and am aware in my own case its not just progressive but degenerative , each year I get slightly more problems and things get worse in all cases.

I did have a sort of remission in the past , but that was when I was in my mid 20's , but since I was around 30-35 years old its just been down hill slowly and steadily , it could be just the way my body responds to POTS and all the conditions that are linked in one way or another to it, so dont think that what has happened to me will happen to you because we are all different and respond to illness in so many ways.

Take for instance a common cold , some of us can just shrug a cold of and yet others can suffer for weeks with it feeling simply terrible , its all a matter of how your own body handles things along with your own personal outlook on life and how you tackle things like illness , I'm convinced that if you can stay strong and positive about your illness and how it effects you then in some ways you can hold back certain things and stay mobile.

Mind over matter comes to mind , but then I dont know about you but when my pain level gets OTT bad along with sheer uncontrollable fatigue , well my mind gives in and nothing matters except strong pain killers a warm bed and a fluffy pair of PJ's to curl up in.

Ami XXXXXXXXXXX

[MomtoGiuliana]

I think you are correct that the vast majority of POTS cases are not progressive, but chronic.

I have GRADUALLY improved since my pregnancy, during the 3rd trimester and post partum period I was disabled by POTS. I still have recurrences/relapses, but each one is shorter lived. I am mostly highly functional, but need extra rest, fluids and a healthy diet to feel my best.

I do wonder, if I had decided to have a second child, if I would be doing as well. Something I will never know. But hopefully some day these questions will be better understood.

[ramakentesh]

Yeah that is pretty much how I find it, but every time I have a relapse I start freaking out that its gonna stay for good.

My history was a mild period of dizziness in 99, then ok, then a sudden onset following a period of cold hands and slight dizziness. Sudden onset was after i had the flu and exercised too hard too early before i was better.

First and probably worst boute lasted for 9 months or so, second came on two years later and lasted 1-3 months, third ive had now for about a month and a half and without beta blockers at present Id be in all sorts of trouble...

[morgan617]

I have gotten progressively worse, but I do have other things in the mix, so I think it would be second guessing on my part to say it's just OI making me sicker.

I believe that doctors, as a rule, think that when the onst is caused by a virus, the outlook for recovery is better. I've been sick my entire life and menopausal stuff has actually made me worse. So I do believe you can only really go on a person to person basis, it's so different with every one. morgan