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Do we get old? Age and health  

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I think I'm the senior in this group. I am 65 and have POTS, suspicion that it may have been with me at other points in my life. I do not think it gets easier with age, because of the other problems that come up and it just is really hard to stay fit and to get through other illnesses and surgeries with age and POTS together. I do worry about heart failure and brain problems, partially because it runs in my family and partially because of what POTS can do. Doctors have reassured me that it doesn't affect how old you live but who knows. But I try to just get better, and some days are better than others. It is hard to juggle.

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I believe that if you eat well and look after yourself then you could live to a good age. I think you would have to have very severe autonomic dysfunction for it to end your life prematurely. I should imagine it is the same for the severely effected ME sufferers as if it is severe then your whole body suffers and eventually cannot take it.

I have had ME for exactly 30 years and autonomic dysfunction has always been part of it. I am now 53.

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I had an uncle who died suddenly in his 40's & have often wondered if it could have been possibly autonomic related. My biggest concern is the decade or so I went undiagnosed with MD's periodically attempting to control my extreme runs of high blood pressure. Now that I am fairly regulated I feel better about it but can only hope damage has not already occurred.

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I'm 57, and mine was a gradual onset after a virus. After 10 years my symptoms became progressively worse. After 3 years of dizziness/vertigo and 3 times misjudging curbs and wrecking my car twice, I finally realized it was time to go back to the doctor, so it took 13 years before diagnosis, even after going to a cardiologist, a neurologist and rheumatologist. I find that funny, because these are the kind of doctors I now visit!! :blink: Why is it called a doctor visit, anyway?...lol. I sure don't rank it as the same as a visit from a friend or family member, do you?! I actually was diagnosed by an ENT, before any testing, because he had done a thesis on Autonomic Vertigo!! That wasn't just circumstance, that was a God incident for me, because He knew I was desperate!! Thankfully, I didn't have any hearing issues.

I live in the moment and some are better than others. I've learned to help others with my nursing knowledge, here, on the internet and on some closed sites on Facebook on the days I'm not doing so well, and then try to do fun things, even if I have to take nausea medications to do it, on the days I'm feeling better. No one knows the number of their days, so I make each day count! I know what my future holds in that I know where I am going when I pass from this life into the next. I'm not worried about it. Yes, I would rather not be sick, but this is my life, and I've accepted it. I'm a lot better with my medications, supplements, diet and exercise. I would like to gain some weight, as I am very thin, but I've been this way my whole life.

I have a loving husband, who didn't believe this at first, and that made it very difficult, but now that's better. I have 2 grown sons, one married, so I hope to be a grandmother soon. I'll be a Great Aunt 6 times in September!! I've lived a full life and I'm happy that I can still care for people in a different but caring way. Each of us have separate issues, so we can't really compare ourselves with others, and shouldn't. I'll be happy even if I just live to see my first grand child. :)

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  • 1 month later...

I beleive i have had pots all my life.i am 50 my mother we also think has it and she is 70.with age we with our type decline.my mother is mostly bed ridden.30 year old son struggleing.so life exp----don't know.but try everything,and continue to seek medical treatment,and answers. :)

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I was wrong. It turns out that people with CFS have shorter telomeres than healthy control. So yes, people with CFS do age a little faster. I know this thread is about dysautonomia, but there are many now in the CFS and community that believe that CFS is a manifestation of dysautonomia. There is definitely a large symptomatic and research overlap between dysautonomia and CFS/ME.

Here is the video:

https://www.youtube.com/watch?v=nyyjRdbvPj0

Telomere talk begins at 14:30, but the whole lecture is very interesting.

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I have had many life threatening events with POTS - just got out of cardiac ICU for six days. Weekly I have hypertension so high that AMA standards say I should go to the ER. I have been referred to hospice but refused to go. I sometimes have 90 point swings in my blood pressure, which is very dangerous. I've syncoped at the top of stairs. I get saline x three a week or I get coronary spasms but I'm allergic to heparin, so eventually I will get a clot. I have mild diastolic heart failure which varies between mild and moderate depending on if I've gotten saline.

I have coronary spasms from mast cell activation disorder and very high norepinephrine and have had two documented MIs and probably many more that I ignored and I have damage from those. Not even mentioning gastroparesis and inability to eat or take in vitamins. I have constant herpes and shingles. My last shingles cases caused 12 arteries to burst throughout my body and by luck, none damaged major organs, the last time - triggered by POTS events.

But POTS will not shorten your lifespan.

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  • 1 year later...

I have wondered about this, too.

Statistically, most people with POTS are under 50.

There is no cure for POTS, so what happens to them?

POTS does not kill us directly, but it stands to reason that they must be more susceptible to seemingly unrelated causes of death.

Yikes.

Let's stay as healthy as we can! :)

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