Heart damage??

[amy777]

This can't be true. I was just told by a doctors nurse(went to prompt care with a major panic attack) that POTS can cause heart damage. Please tell me this is not true.

[Merrill]

That is soooooo NOT TRUE, Amy. She's wrong wrong wrong.

Not true. Not true. Not true.

Peace,

Merrill

[MightyMouse]

Not true. One can have POTS-like symptoms as a result of heart damage, but POTS in and of itself does not damage the heart. I have never read any research supporting that nurse's statement. POTS can be a long term illness--not fatal. Also, rather than get worse, many who've had sudden onset actually get better, not sicker. There are some exceptions--such as those with underlying disorders causing the symptoms of POTS, such as someone with Parkinsons or other progressive disorders. Generally speaking, dysautonomia is NOT a progressive disorder, although the symptoms that one feels may shift over time.

Uncontrolled bp can cause heart damage-- if you're on meds to moderate your bp, you're at no greater risk than the general population. I have huge swings in bp, both high and low--on meds, the range isn't as extreme.

Please read the main sections of the DINET site--most of your questions will be answered there. To see what research has been done, and to read abstracts of those studies (brief summary of findings), you will get a better understanding of what's going on with your body.

http://www.dinet.org/research.htm

Also, please consider downloading the NDRF handbook on dysautonomia--it does a very nice job of discussing each syndrome, treatments, caregiving, etc... It's free and you only need the free Adobe pdf reader program to open it.

http://www.ndrf.org/NDRFHandbook.htm

Nina

Edited November 22, 2004 by MightyMouse

[ramakentesh]

i was reading something on Cardio Myopathy that concerned me - please im not doing this to stress anyone, just thought id mention it. This was in a medical journal i bought from a garage sale, and its from the early 80s, so ill tqake ith with a pinch of salt (or a teaspoon to make me less dizzy)...

It said that most cardio myopathys are of unknown cause, but that certain metabolic disorders predispose people to this illness - namely sarcoidosis, hyperthyroidism, and other hyperadrenal states or symptoms of beta overactivity.

Is this still a current concept in medicine??

What meds are you on for BP - mine is the same.

[MomtoGiuliana]

All I can say on this is what I have been told by my endocrinologist several years ago and also my electrophysiologist. I have both thyroid disease and POTS and went through several episodes of being both hyperthyroid and having bad POTS at the same time. I also had this concern. Cardiomyopathy is a concern for UNCONTROLLED hyperthyroidism, where the heartrate is pretty consistently and for a significant period of time -- 120 bpm or higher day and night. I would think the same concern would hold true for POTS, or IST or any other condition that causes your heartrate to soar. If you have a CONSISTENTLY high rate of over 120 bpm (both when awake and sleeping) it should be controlled to eliminate the risk of cardiomyopathy. Again, this is what I have been told by my doctors. Perhaps there is other information out there. On this issue, I feel certain that my physicians are quite knowledgeable.

Amy, I am sorry the nurse you saw frightened you so. I have also been told things by nurses that ended up not being quite right. Not to denigrate nurses at all, b/c I have also been under the care of excellent nurses. But, on questions like this, expect that a physician, especially a specialist, would have the last word. So, next time you see your doctor, ask her or him this question, for peace of mind.

Also, what Nina said about blood pressure is a good point. This may be more of a concern in the long run than tachycardia for many of us. Again, consistent high blood pressure over time, is damaging to the heart. So, if POTS is causing you to have high blood pressure that is more than just transient, medication is a good idea.

Katherine

[ramakentesh]

so do you think that your pots is autoimmune related as most thyroid diseases are?

[MomtoGiuliana]

ramakentesh

It is interesting that a fair number of forum members have both POTS and at least one autoimmune condition.I really don't know--nor are any of my doctors willing to suggest any cause. It seems possible that my POTS is caused by an autoimmune problem. But, the odd thing is that it flared DURING pregnancy--most autoimmune problems are suppressed during pregnancy due to a general supression of the immune system.

The other thing is that I strongly suspect familial POTS. My sister also has it and I believe my grandmother had it, but was never diagnosed (she was a fainter and had episodes of very bad fatigue throughout her life).

Katherine

[ramakentesh]

Definately familial - there are a b\number of people in my family in the past who had strange reoccurent fatigue, tremors and 'nervous system problems.'

[katsusu]

Hi,

I just wanted to clear up one thing that was said about POTS being a secondary condition to Parkinson's Disease. Ihave both POTS and Parkinson's- but both my POTS and Parkinson's are considered primary. If i was orthostatic hypotension it would be thought as a secondary condition to PD, because for some reason people with PD lose their sympathic nerves to the heart which cause orthostatic hypotension-the complete opposite to POTS-yes you can go OH with POTS but losing the sympathic nerves to the heart should not be able to make you tachycardia as well.

Actually- it is very - very rare to have POTS and PD. But PD can causeother dysautonomias- it just is not known to be the cause of POTS in people with PD. As last I heard- i was the first person NIH saw with PD and POPTS- the doctor did not really believe it. I think he has found someone else-wh has PD and POTS. My test results contradict each other- and basically >i should not have both.

So has far as PD is concern- POTS effects PD asmaking life harder for me as PD makes living with POTS harder--but Pots does not make PD progress faster- so far.

Kathleen