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I've never heard this from a POTS specialist or in any of the 4 years of research I've been doing on the subject. And, frankly, I can't think of one medical technique that is able to accurately predict when a chronic illness will end.

(Plus that would mean I only have 10 1/2 more years of this?! There's something to look forward too. ;-) )

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Did they perhaps mean onset is unlikely over 50? I've read that it's more common in pre-menopausal women but it seems like anyone can get it. Given the diverse causes I would think it would be difficult to predict the course in all patients.

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My symptoms started after a viral illness a day after my 51 st birthday. A doctor (PoTS specialist) said that I'd just 'got in on the edge of the range'. Many of the articles I've read talk about women of menstruating age which fits the age range of onset given.

However, I've likely had minor EDS symptoms since my 20s but was not aware.

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YES! Only four more years! Sorry, I'm being kind of sarcastic. My understanding is that a total remission is more likely for younger POTS patients and that people who develop the condition later will have to deal with it the rest of their lives.

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I only know that the scientific literature used to define the usual ONSET of Pots in people between 15-50 years old. However, this starts to become debatable, as more and more patients younger than 15 and older than 50 get their first diagnosis.

Concerning the chances for remission: Many teens who get it, seem to outgrow it after some years. However, there are still not enough follow-up studies for teens who got it at the age of 16 and outgrow it f.e. at the age of 22. There's yet not enough data to conclude, how they will be doing, when they reach their 30s and 40s.

On the other hand, people who get their first diagnosis at the age of 45 may have had Pots in a very mild form for over 30 years already.

So the question 1) of the age of actual onset and 2) the point of time of first diagnosis are still without clear answers and full of speculations, as one Pots doc recently told me.

To him, it is most important for any patient to get a right diagnosis, to detect subtype and possible underlying causes, and eventually getting an individualised form of treatment. These factors will decide much more about the outcome than the patient's age.

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I was 41 when I had a virus, then my symptoms became progressively worse...very low blood pressure, very high blood pressure, then high cholesterol, binocular defect, swelling on right side along with heaviness, and neuritis for about 5 years. After going to all the right doctors, Cardiologist, Neurologist, Rheumatologist, ENT etc. I gave up in finding a proper diagnosis, until my symptoms of dizziness/vertigo crept in, horrible insomnia, heart arrhythmias, feeling faint, heart, and "coat hanger" pain, etc. After 3 years of this, and wrecking my car twice, I decided I was desperate! I found an ENT in Birmingham on line, who had rave reviews, and without knowing this, his son, also an ENT, Dr. Pappas Jr., did a thesis on autonomic vertigo. He diagnosed me right away even without testing, (although he did tests anyway for Meniere's), and sent me to the Autonomic Disorders Center of Alabama in Birmingham. The age limit was 55 and I was 54 at the time! God found these doctors for me in the nick of time, because His timing is perfect! Looking back, there were several times when I was younger that I felt faint, and from when I was little, I knew how to put my head between my knees after sitting down, when I felt that way, and I also have a Mitral Valve Prolapse, too, which I never knew until I was diagnosed at 54. I'm now 57, and will have this for the rest of my life, according to my doctor's. They say I have Pure Autonomic Failure, but I believe I'm more Hyperadenergenic; they are monitoring me closely. I've been giving one medication at a time, and so far, so good, I'm improving some with medication. I wouldn't be functioning without it! I also have Sleep Apnea and Fibromyalgia. Just curious...why would you think that no one in there 50's would be on this forum?! There are very techno savvy 50 somethings, who are much more informed than you think!! No offense taken, btw. I'm here to learn and to help. I'm a retired RN. ;):)

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Careful now, I'm sure there's a fair number of us "elderly" folks here. ;-)

I was dx by my doc and myself at the grand old age of sixty. When I went to the Mayo Clinic MN later that year, I was told I couldn't have POTS because I was too old. My pulse rose 50-60 bpm within ten minutes of standing. I also failed two TTT there, one in the neuro dept and one in the cardiac dept. They seemed to want it to be cardiac based instead of neuro, but could never find anything wrong with my heart.

My only diagnosis from them was neurogenic syncope. To me that's a symptom, and only one of many. But, since there currently doesn't seem to be any cure, what we seem to focus on is controlling the symptoms as best we can. This forum has been extremely helpful with that and also keeping up on current research.

Thank you for all your sharing of individual hints and things that work and don't work. It helps to know there are other options to keep trying. I've found that in the last three years as my health continues to worsen, you have provided new ideas to try when I need to add to my arsenal of tricks.

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I was first dx with pots when I was 55 but knew I'd had it for a few years.

If it had only stayed the way it was then I'd be glad but it's deteriorated considerably.

A recent Mayo visit showed I have not only pots but NCS, (another form of dysautonomia). Because of this my heart rate varies from 135 to 50. Both tachycardia and bradycardia.

A 24 hour BP and heart rate monitor at Mayo showed that my BP is also labile. It can be extremely hyper and hypo. Diastolic as high as 180 and as low as 70.

My mayo neurologist is a pots expert and researcher, and she has not been able to find a medication yet that doesn't dramatically cause BP issues.

I was also dx at Mayo with hyperhidrosis and for added fun I'm hyperadrenergic with an NE over 1500 SITTING! (It's usually measured standing but Mayo has changed their protocol.)

So 'usually' (as was mentioned above) women 50 and older do not get pots. But clearly that's not true. Not only do we get it but it can be very extreme.

Best,

K

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I'm 58. I was diagnosed just in time for my 50th birthday. I had strong symptoms for years before diagnosis! and before that, intermittent symptoms from probably age 18. I was greatly disappointed because the reading i had done had indicated that when menopause was finished I should see an improvement of symptoms. I was told by another potsy that Dr Grubb told her that she would possibly see an increase in symptoms during her menopausal years. I was prepared for that and was thinking I am worse because I'm menopausal. But that has pretty much passed and my hopes in that area dashed. I have gotten worse. My pots specialist told me just recently that I most probably have mitral valve prolapse. I'm waiting to see him post having an echocardiogram but to be honest, because of his confidence in the MVP diagnosis and my experience over the past few years of tachycardia increase (frequency) and other things.... well I will be surprised if I don't have it. Although, i guess That will just mean pots has become even less manageable.

Blue

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I am 63 and have been diagnosed at Johns Hopkins with POTS and NMH about 5-6 years ago. I had many symptoms starting around age 11 and had symptoms until my early 30's. Then I went through a "remission" for about 15 years, then the symptoms came back but it took years to get a diagnosis. A nephrologist figured out that might be what I had and referred me to Johns Hopkins for the TTT. I would think that people our age that have been affected by this disorder would be valuable to be studied. That is just my opinion. Remember POTs and NMH were not recognized as a diagnosis until much later then the onset of my symptoms. Kim, I agree with your comments. liz

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I started with POTS symptoms at 46 and am currently 54. Mine was sudden, and I never had symptoms my whole life, so I think mine must be autoantibody based. That's why I am so interested in the very latest studies on them finding the antibodies, because there are treatments for that.

I think what they probably mean is, the people with some kind of hormonal basis, such as it mostly hitting young females, is why it mostly hits younger women versus older women. But, there are sooooo many reasons people get POTS. This is what I've learned over the years from what I've read in past studies(I just call everything POTS, but they each can be a separate name):

1. There is the group of slender adolescents that go through a growth spurt. Due to there "tall, lanky" body type, the kidneys don't have enough fat support to hold them in place. Due to this, the kidney vein gets compressed and causes symptoms. When the person puts a little weight on, this gets better as the kidneys are physically supported.

2. Some adolescents have anemia that isn't "jump out at you" obvious, and in turn causes POTS. When this is corrected, the POTS gets better. Just a thought here, but maybe this would be the basis for the "women over 50 don't get this", as menstruation stops and they are not likely to be anemic if they were before.

3. EDS. This is genetic, so began early. Maybe symptoms began early and maybe not. It may be they hit a tipping point later in midlife.

4. Viral autoantibodies. This can hit at any age, most likely sudden onset. I believe this is the type I have.

Just some vague categories I've noticed pop up over the years.

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Bell girl, I should have said if anyone that was cured and over 50, would not most likely be visiting this forum. I do not have Pots but I have PAF. I will not name the doctor but if I did, most of you would know this doctor. This doctor , seems from these comments to be wrong or did the ones who did get over it never let anyone know. If I got over this, I would scream from the rafters and post it on every forum I could find and I would not just post one time but many months over, so other would have hope.

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To be honest, the doctor's don't know much more than we do about this disorder. All of us are very informed, and everyone has these disorders for different reasons. That's why I believe it is so difficult to diagnose. If you don't have any more than your typical blood work, doctor's are not going to pick up on the symptoms. I had a Cardiologist tell me there is no treatment for POTS, (I supposedly have PAF, too), at which time I shared that my doctor treating me for my Autonomic Disorder has helped me have a much better quality of life, because of the medications I'm currently taking!! That's true that if someone was cured they wouldn't be on this forum, but if you are over 50 and still sick, chances are that they are not going to find a cure in our life time. I'm not wanting to be negative, I'm just being realistic!! I would certainly tell all of you, if I was miraculously cured!! I certainly have not lost hope that it is possible, though, especially for the young folks here and other dysautonomia sites. :)

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Got POTS at 19 in 1973.

I turned 60 last week. Just got out of the ICU cardiac after six days from making a very minor mistake. I only get worse.

I think it's best to face the truth that nobody can tell if you get over POTS or not; it depends on your cause of the illness and endless other factors.

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  • 2 weeks later...

Yeah, those of us over 50 really don't have pots anymore, it just that we have gone senile and think we still have it. I really shouldn't joke like that because I suspect someone will be told that in all seriousness by their doctor. I am 58 and have had pots since my late teens. I am male. The condition still keeps changing; my latest new symptom is frequent Anaphylactic reactions (17 so far this year). I have tested negative for high tryptase during these reactions so mcad is not being considered. They have found that I am allergic to meat except for fish and fowl. This is the result of a tick bite and is a fairly new condition in the US and doesn't seem to be pots related.

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Hi vermee

Do you know all the things that you are so dangerously allergic To? I had my first anaphylaxis response about 14 years ago, when I was 44. Until then, when asked by any doc what I'm allergic to I used to be able to say 'nothing.' Now, I have many allergies, some not so serious, some life threatening anaphylaxis. Aspirin is deadly for me but other things we aren't so sure of. I have had the usual anaphylaxis and also anaphlactoid reaction ( which they are now calling non immune anaphylaxis. Which does my head in - how do I have an allergic reaction to something my immune system does not see as being a threat?) I've no education in things medical and I'm having trouble with this 'explanation'

17 anaphylaxis reactions this year sounds frightening and exhausting. You are the first person I have met that is allergic to meat.

but I do know we can be allergic to anything at all.

Sometimes I muse that while we poison the planet, perhaps we are, very rapidly, poisoning ourselves.

But I am also aware that anaphylaxis reaction statistics, at least until now, have not been reliable. As in, causes of death in the past may have been put down the to heart attack, say, rather than anaphylaxis.

Blue

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Bell girl,

I agree with you on all counts too. At age 58, it's no longer about a cure for me. It's about the best life I can live in the time left to me.

I'm also finding that family and friends of my age are starting to have health problems that come with aging so I'm not such an oddity now. And I also see their indignant responses to their experiences of how 'most people don't understand.' Something we here, all, got to experience way before our time.

Blue

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Blue: I use to be allergic to the usual pollens and stuff like that. Now I have a whole list of food that I am allergic to which was not allergic to before. They say that the meat allergy is spreading and probably affect a fourth of the population in 5-10 years. People who are outdoors a lot will get hit the hardest.

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