Opp - Older People With Pots

[futurehope]

I noticed for the longest time that when I read about POTS, the articles usually mentioned a young onset and good prognosis. I often felt that they had NO idea about me, someone who began getting really bad at 51 years old.

Seems the researchers do not look at our subset of "adult-onset" of POTS as much as they look at the teen onset. Have you noticed that?

Any comments?

[ramakentesh]

Ive noticed this, but i think it may be because two of the main researchers work at bodies that work only with kids and teenagers, thus their work has to relate to this specific group of patients.

[gertie]

I have noticed that the senior population is usually ignored in everything. It may just be the area I live in. When you get 65 or over it seems if you sneeze or have a memory lapse they immediately diagnose Alzheimers or dementia. If you ever voice your opinion about something & it doesn't agree with the norm your considered a troublemaker or senile. The same problems that in my 40's no one noticed now is a big deal. Maybe I'm over exaggerating just a bit but that's how I see it.

I had dysautonomia for at least 25 years b/4 I was finally diagnosed at age 64 . Every dr I went to for years told me my symptoms were all in my mind. When a dr finally told me what was wrong with me I almost cried from relief. He could not believe what I had gone through.

Sorry for the rambling. Don't be ignored. Good luck!

[bjt22]

As someone who's dealt with this for many, many years, I do notice this.

I've felt for awhile as if we are just sort of put out to pasture. Not surprising in the society we live in. I think this is also influenced by the earlier literature that was put out that did describe this as a problem of "young women" and that these young women tended to "outgrow it". I think there might be some confusion and difficulty in explaining all of us, um, not so young women.

I will admit to feeling some middle-aged angst. Personally, I feel that there sometimes is the underlying bias going on that younger people should have some kind of RIGHT to feel better....and as someone who really had this start up full force while my own children were very young, I can understand this. Younger people have a lot on their plates and something so disabling is a horrible cross to bear at that stage in life. But come on....even though I'm through that stage, it doesn't mean that I still don't want to FEEL better. And no, what's happened to me isn't just something that I want to accept as "aging". I don't expect to feel like a 20 year old, but on the other hand, I shouldn't have to accept feeling like a 95 year old, either.

I do think there is some reluctance on the part of the medical community to really delve into this because they JUST DON'T KNOW what having this means as we age. They aren't comfortable talking about unknowns. Couple that with earlier reassurances that this wasn't something that should be life threatening or have any effect on any other disease process and, well, there you have it. Maybe they just don't really KNOW what to say to us.

[maggie]

This is an interesting discussion. I have always been a healthy person. Not until age 52 did I start having symptoms, high heart rate standing, you know the usual stuff. I went to my intern and started running tests couldn't account for heart rate, started med, I got sick. To make a long story short after seeing five different dr no one knew what I had. I have a classmate that works for Mayo and gave him a call. He got me in the Mayo here in Florida and withing three weeks after testing I had my results, pots. The dr couldn't believe I could get it at my age. If it wasn't for my classmate I don't believe I would have ever gotten in Mayo so fast, maybe not at all. It took me 10 months to get my dx. I am realizing how unusual this is, to get dx so quickly. They don't treat pots at Mayo in fl so it is very difficult to find dr to help me. I finally found a young dr who was willing to look into this and he also has a close friend who works for Mayo, so he was willing to take me on as a "patient of interest". When the disorder is so unknown and not many have it the funds are not there to encourage research for this type of issue. Life isn't fair but what is one to do? I am now 55 and have seen improvement with my condition, but I sure would like to get back to my old self. Now I'm startng to wonder is this wishful thinking?

Maggie

[futurehope]

This is an interesting discussion. I have always been a healthy person. Not until age 52 did I start having symptoms, high heart rate standing, you know the usual stuff. I went to my intern and started running tests couldn't account for heart rate, started med, I got sick. To make a long story short after seeing five different dr no one knew what I had. I have a classmate that works for Mayo and gave him a call. He got me in the Mayo here in Florida and withing three weeks after testing I had my results, pots. The dr couldn't believe I could get it at my age. If it wasn't for my classmate I don't believe I would have ever gotten in Mayo so fast, maybe not at all. It took me 10 months to get my dx. I am realizing how unusual this is, to get dx so quickly. They don't treat pots at Mayo in fl so it is very difficult to find dr to help me. I finally found a young dr who was willing to look into this and he also has a close friend who works for Mayo, so he was willing to take me on as a "patient of interest". When the disorder is so unknown and not many have it the funds are not there to encourage research for this type of issue. Life isn't fair but what is one to do? I am now 55 and have seen improvement with my condition, but I sure would like to get back to my old self. Now I'm startng to wonder is this wishful thinking?

Maggie

I was one of the lucky ones in that from the time the symptoms became debilitating, it was a matter of months. I had narrowed down my symptoms and thought I had mitral valve prolapse, or neuro cardiogenic syncope (without the fainting) so I called Johns Hopkins neurology in Baltimore (where I live) and asked for a doctor who "understood" the above diseases. The doctor at Hopkins works with children only, but I was given a referral to a neurologist in my area who surmised I had POTS after taking my history and doing some "poor-man" tests. It was later confirmed with the tilt table test.

[firewatcher]

I think that the researchers hone in on the younger population because of less frequency of comorbid conditions. As we age, things go (boy do they go!) and it makes it harder to untangle what is causing what. A younger person will have a "fresher" system with less compensation mechanisms or interference from life's physical experiences. They are also the ones with the time to be strapped to a tilt-table and go through all the testing. The older people "generally" have lives, kids, jobs, etc. and can't or won't respond to calls for human guinea pigs.

[Sophia3]

Ten years ago some places that specialized in this illness said they saw no women after menopause therefore concluded (WRONGLY) women got better.

We now know many early articles of patient improvement were flawed. Many now know with women, the complexities of the ever fluctuating female hormones, and others, complicate this illness.

Dr. Grubb said to expect big changes after menopause, probably worse going by history. This was in 2001.

Now other older women are angry at being told things would improve when in fact 'some may' but many others do not. Thus making broad statements of cures, improvements is not a good thing. Best to just be honest and for doctors to say they do not know.

Hope in how you cope with this after 10, or 19 years is different than hope you will "spontaneously" improve which can be insulting. Yet early in the dx of course one hopes for much improvement, especially when hit with sudden onset.

[samannran]

I've noticed a lot of research stating that most people with an early onset recover. I've had symptoms all my life, started fainting at 14, and got diagnosed at 27. My illness keeps progressing, and I'm 32. I read a lot of posts from people with similar stories. I hope more research is conducted about patients who have been sick most of their lives. I keep hoping I'll "grow out of it." But so far, no luck.

If I didn't have so much brain fog, I'd do some research myself!

[morgan617]

I barely read the research any more, but back when I did, it seemed all the studies involved people younger than me. I don't know if people are getting help at a younger age, while some of us just "lived with it" for as long as we could, because no one had ever heard of it.

I have some other health issues too, I have found out, so even if my stuff was more regulated, the other problem would still make my life miserable and there are almost no treatments at all for it. At least they can't blow it off, well they can, but it's a genetic mutation and you can't blow those off as easily. My treatment tends to be as bad as ever, except for the doctors who've known me forever, so I just go day to day.

Jake is showing more and more POTS stuff, and I know it's not going to be a short lived thing with him either, so as annoying as it is, I guess I hope the younger ones have a chance to get better treatment than I have.

I do fear that when and if universal care kicks in, those of us with chronic, expensive long term problems will get even more of this. This is NOT a political statement and not meant to offend any political party. Even in the system we have now, the chronically ill do not, as a rule, get the same treatment as the acutely ill, or the ones who rarely get sick. Or younger folks. So, I don't research much anymore. morgan

[Griffin]

I've finally been diagnosed in my late fifties with hypotension and tachycardia. I've had hypotension all my life and at a guess tachycardia for much of my later life.

I also have a diagnosis of Chronic Fatigue Syndrome and have noticed there tends to appear to be more young than old people with that.

Personally I think older people don't get these diagnoses for several reasons: 1. they are old so it doesn't seem to matter so much (to the doctors!), 2. the conditions get missed with other diagnoses hiding them, 3. older people expect to feel some level of deteriorating "wellness" so don't complain... etc I'm sure there are more.