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maggie

Older Person With Pots

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I am a new member to this site and am wondering if there are any others on this site who was diagnosed with pots at an older age. I started having issues in nov 05 and finally received my disgnoses of pots in oct 06. I am now 55 and am looking for support from anyone who is older dealing with this disorder. I guess it doesn't matter what one's age is but I am interested in this.

maggie

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hi,

I'm 52 and have NCS- not POTS.

Did you get your diagnose when you were older or have you had ncs for some time now. Thanks for answering my question.

maggie

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I was DX about 2001. It took 5 years for the DX. I was having serious problems since like 92. No doubt I've had this much longer but it was manageable.

developed orthostatic hypo tension (in 92), which aggravates the NCS.

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I am a new member to this site and am wondering if there are any others on this site who was diagnosed with pots at an older age. I started having issues in nov 05 and finally received my disgnoses of pots in oct 06. I am now 55 and am looking for support from anyone who is older dealing with this disorder. I guess it doesn't matter what one's age is but I am interested in this.

maggie

Hi!

I was diagnosed at 51 years old and am 57 now.

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Hi Maggie~

The forum does seem to have quite a few younger ones, yes? I was diagnosed with cardiomyopathy (probably caused by a virus) in January '06, and then with POTS in July of '07. I'm sure I had it earlier, but that's when they diagnosed me here in Tucson at the Sarver Heart Center. I was working at a job I coveted, and it took me totally by surprise. I am very intolerant of meds, like so many of us are, so am not able to take Florinef or Midodrine. I had to leave work approximately two years ago, and miss it greatly.

I have one son finishing college in California, and have lived in Tucson for 5 years. I was originally an Iowan...brrr! I'm glad to hear from a little more 'mature' member. Thanks for writing, and feel free to send me a personal message.

Cheers,

Jana

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Ok now.. I AM the oldest at 60 !! LOL

All I know is that something has been wrong for a long time. But mostly since '93 and more recently getting worse.

I have an autonomic problem AND some other kind of disorder or autoimmune problem..like Narcolepsy with Cataplexy

but they still have not firmly diagnosed it.

I am in limbo since my auto testing in 2/09 which he confirmed some kind of auto problem. Still waiting treatment orders.

But good to meet all you ladies !!

Warmly Jan

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Am 52. Dx with insomnia/tachycardia CFS in 1990 after PREVIOUS CFS dx in 1985 that I controlled with lots of sleep and odd houred jobs. Immunologist claimed I had "chronic adult mono" but we now know mono has nothing to do with this.

I have Orthostatic tachycardia and huge fatigue issues. My low BP shows up supine or in morning.

I had to quit working full time in 1990 and even part time in 1998. but this form of Autonomic dysfunction I have has progressed but been in reclining position during 85-90% of waking hours for years.

Struggle to keep an appetite and eat as much as I should.

In retrospect and examining history, I have had MILD ANS issues since a little kid. So was born with my version..tachycardia did not show up until 1990..or was not brought to my attention until then.

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I am 52 and have had pots since at least my teens. I wasn't diagnosed until 4 years ago when the symptoms got really bad and I had to leave work. Before my diagnoses I had the usual "there is nothing wrong with you" experience that others on this board have had. I was passed off as being depressed and given antidepressants which caused their own set of problems for me. I had been diagnosed with ncs in 95 but it was made to seem like it wasn't that big of a deal and I was taken off the medication I was initially given.

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Hi Jana,

Thanks for answering my question. I'm new to these chat forumn so it is taking me some time to learn how to use this site. I also am intolerant to meds, in fact I got so sick from the meds they were trying I was hospitized twice. I wanted to let you know that I found on a news brief that there is a new test out by the university of louisville that checks your DNA with drug interactions. I took the test and have discovered that I have a liver enzyme metabolic activity, which means I can't take any med that goes through that liver enzyme. It took all the guess work out of what the doctors can give me in regards to meds, which is not much. If you want to take a look at the web site it's www.pgxlab.com. The doctor who is helping there gave me her personal phone number and now when dr wants me to try a new med I just give her a call and she tells me if I can take it or not. At this point the only med I'm on is Xanax for helping sleep at night and an herbal to help me with my adrenals. I owned a quilting business before I got pots and have also had to quit. I have just been able to start quilting again but am not ready to start up my business as of yet, not well enough. I read alot and quilt to keep myself busy and am able to get around somewhat. I find the hardest part of dealing with this is the isolation it brings into one's life. Thanks again for responding.

Maggie

Hi Maggie~

The forum does seem to have quite a few younger ones, yes? I was diagnosed with cardiomyopathy (probably caused by a virus) in January '06, and then with POTS in July of '07. I'm sure I had it earlier, but that's when they diagnosed me here in Tucson at the Sarver Heart Center. I was working at a job I coveted, and it took me totally by surprise. I am very intolerant of meds, like so many of us are, so am not able to take Florinef or Midodrine. I had to leave work approximately two years ago, and miss it greatly.

I have one son finishing college in California, and have lived in Tucson for 5 years. I was originally an Iowan...brrr! I'm glad to hear from a little more 'mature' member. Thanks for writing, and feel free to send me a personal message.

Cheers,

Jana

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I am a new member to this site and am wondering if there are any others on this site who was diagnosed with pots at an older age. I started having issues in nov 05 and finally received my disgnoses of pots in oct 06. I am now 55 and am looking for support from anyone who is older dealing with this disorder. I guess it doesn't matter what one's age is but I am interested in this.

maggie

I'm 48, male was dx in February of 2009.

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Hi Maggie, I was diagnosed in 2005, at 55.

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Hi Maggie, I am 54, and diagnosed in 2001. There are more oldie moldie golden gassers here than you'd think...lol, I hope I am not the only one that remembers that term of endearment! morgan

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Hi Maggie, I am 54, and diagnosed in 2001. There are more oldie moldie golden gassers here than you'd think...lol, I hope I am not the only one that remembers that term of endearment! morgan

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I'm 55 and was diagnosed with PAF in 2008, although my symptoms started getting bad 3-4 years ago. I'm wondering if anyone else started getting bad symptoms around the time of menopause. I never got any hot flashes or any of the normal signs of menopause - just syncope.

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Hi I was born in September 1953 and I really believe something has been wrong with me my whole life. If you read my about me page it's tells most of it as today, I have no energy today to tell it all. Dx in Dec 97 with Pots.

My quality of life right now is not ideal, but through the Grace of God I'm embracing this with all my heart and trying to make the best of each and every day. :)

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Hi Maggie,

I was dx in 2007 at age 69 and 8 months with orthostatic hypotension, but had been feeling lousy for a few years before that. Then at age 70 with Parkinson's. As the saying goes, "You're never too old to.....!" Try to keep your spirits up. God Bless.

Mary P

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Guest tearose

Goodness, I never admit to my age but since we may learn more by sharing this since we are "aging out" of the young lady group...maybe we old timers do develop a progressive situation...I hope not but anyway...

I am 52.

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Hi, just turned 52. I also remember pre-sycope symptoms and dizzy spells back into grade school. They always passed fast, so I never said anything as a kid. Me mom had toxemia with me. After looking at the list of causes I've had car accidents, inactive (supposedly) thyroid/adrenal nodules, mild left diastolic heart dysfunction, high insulin, endometriosis & PCOS and used to have a positive ANA. So any or all of the above???? I guess at one point, I would have fit into the young womens' group, but it doesn't appear I ever aged out of it ;):) It would have been lovely if I had though.

Right now it doesn't feel like it will ever go away <_< I am trying to be hopeful now that I had a recent positive TTT, that I will find something that helps. I suspected I had this when I found this sight about 4 years ago researching that adrenal nodule. There used to be a long list of symptoms here, and most of them described what happens to me when I get what, I now know is syncope. I found Dr. Yan Go listed at UCLA, and she is the one who told me to do the poor man's tilt at home for 2 months. After doing this it became obvious, I had no idea my BP's and HR were doing what they were doing, until then. I think when you've had your heart doing that your whole life, you don't know the difference, you just know you have a lot of pain and fatigue and it's hard to do things and some things make you feel really sick. Without realizing it you become very good at compensating.

Yes, I am the Queen of compensating and avoidance!!! :lol:

I don't know about the rest of you 40/50 something's but I don't feel like an oldie, moldie, at all. Maybe because I wasn't able to have kids, I missed all those rights of passage, so I still feel very young at heart. Not to say the body doesn't feel oldie moldie a lot, but it's been feeling that way most of my life, so I don't connect it with getting older.

Really I do hope we all will improve some day, some day soon, would be real nice!!!

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I'm 55 and was diagnosed with PAF in 2008, although my symptoms started getting bad 3-4 years ago. I'm wondering if anyone else started getting bad symptoms around the time of menopause. I never got any hot flashes or any of the normal signs of menopause - just syncope.

Absolutely, yes. My symptoms prior to menopause were manageable. My life was relatively normal, except for poor stamina and easy fatigueability (especially in the sun), and unexplained "bouts" of dizziness that were incompacitating. But once the bout disappeared (probably due to treating the undiagnosed anemia which I had due to excessive bleeding during perimenopause) I was back to being my "normal" self.

I have now progressed to the point that there are no longer "bouts". I am always this way, with "crashes" in between.

My dad had similar weird things going on with him and it took him literally 30 years to die. He was weak, didn't like walking, had palpitations from he knew not what, had no stamina, excessive nausea and no appetite. He eventually succumbed to ???? from lack of eating. He had stopped eating all together because of constipation, nausea, (probably had gastroparesis), and died because he wasted away and all body systems had stopped. Malnutrition was a contributing factor. Nobody could get him to eat.

I'm scared to death that I have what he has. It takes a long time to die that way. That's for sure. And they really had no idea what was going on with him. I honestly do not think they totally understand what is going on with me either. They call it POTS, but what does that mean and how has it helped my day to day life to have that diagnosis other than I now have a label for it?

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Guest tearose

Us older folks have never gotten all better eh? I suppose we demonstrate early signs of something.? I think we are more sensitive and current testing technology can't see what we feel and know.

futurehope...my dad had similar pattern to his decline too!

He showed slowing and symptoms and at 50 was said to probably have Parkinsons at 70...only later to be though of as Lewy Bodies... which showed like PAF...took him about 20 years...

There is so much we and "they" (researchers and doctors) don't know.

I am just desperate to "Hold onto" all my abilities for as long as possible. My mind is strong as my body seems to struggle.

I hate this syndrome. I just want "them" to figure out what enzyme or protein or cell dysfunction is going on.

May we all find a way to keep our abilities for as long as possible.

my prayer..."Please Dear Universal Energy, preserve us all"...

always,

tearose

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