Older Person With Pots

[mkoven]

Not sure when "older" starts. I"m 42, diagnosed at 39. I"m convinced perimenopausal hormones have brought this out, on top of my ehlers-danlos, which also did not get diagnosed till roughly the same time. Started with the occasional symptoms of presyncope, as early as age 35. I officially have pots and oh, but my hr doesn't really get that high on a daily basis. I'm much better on meds and after some cardiac rehab. I try not to project into the future--just try to get myself as healthy and functional as I can in the now.

[futurehope]

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" 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

Oh, Tearose, I can relate. It was difficult watching my dad because they just attributed his problem to being "crazy". The doctors could never find anything wrong. The good news is (though it's not really "good") is that when he passed, there was no pain. He just went. No pain pills. I'm glad for that. He had all his reasoning up until the end. The nausea was a constant companion. It would be nice if they figured us out before we aren't here anymore, right?

[bjt22]

Hmm? Am I "older"? Maybe I'm kidding myself if I even have to ask.

I'm in my middle forties, but I've been dealing with this since my early thirties. Well, I've been dealing with it being BAD since my early thirties. I've probably had a milder dysfunction my entire life.

[bjt22]

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?

This has occurred to me. My father is 77. He was diagnosed with Parkinson's about 5 years ago. Mild at first, but like your father, he had many strange things go on for a very long time, too. I also need to add that his mother, my grandmother, had what I am sure would be diagnosed as POTS today. My father had "spells" all of his life. That's why I never thought it strange that I did, too. I'm thinking that now his Parkinson's diagnosis is not correct or complete. I do think he might have MSA or Lewey Body Dementia, or, quite possibly, there's entities out there that just haven't been articulated at this point. He had some kind of episode back in January that put him in a nursing home. It was not typical Parkinsons. He's also dealt with atrial tachycardias for the past 10 years.

To present a positive side to this, however, I have to share that his mother, my grandmother, lived to be 87. While there was no diagnosis of POTS or PAF or autonomic dysfunction, as I said in the previous paragraph, she was a classic case. They treated her for EVERYTHING. I think her receiving this treatment for all of these symptoms, as they arose, probably allowed her to live so long. And...she lived in her own home until the day she died. I'm sure she dealt with a lot of disability that we just simply not understand at the time, but you know, it didn't turn out that badly for her.

[futurehope]

To present a positive side to this, however, I have to share that his mother, my grandmother, lived to be 87. While there was no diagnosis of POTS or PAF or autonomic dysfunction, as I said in the previous paragraph, she was a classic case. They treated her for EVERYTHING. I think her receiving this treatment for all of these symptoms, as they arose, probably allowed her to live so long. And...she lived in her own home until the day she died. I'm sure she dealt with a lot of disability that we just simply not understand at the time, but you know, it didn't turn out that badly for her.

Just for reference sake, my father with his strange problems lived until 86 years old.

[futurehope]

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.

I think all we know at this point is that doctors do not know. I do remain optimistic that some correctable deficit will be found while I'm still on the planet.

[Mary]

Hi Maggie,

My symptoms started out of the blue on 7/02 when I was 43. My doctor believes it was due to a virus... but I don't remember being sick. The diagnosis came in 12/02. I was very incapacitated in the beginning but have been determined not to give in and let POTS take my life away. My doctor said if it was virus related it could possibly go away in 5 to 7 years, or at best my symptoms would level off and not get any worse. I recently turned 50 and have felt my body strengthening and my symptoms lessening as each season passes. Summer heat is the worst. I use cooling collars, try not to overdue and stay in AC whenever possible. Vitamins are the only medicines I take and I drink water all day. I have my ups and downs but the ups are greater in number. I have become very aware of my body and listen to it daily. I have learned not to allow frustration with POTS symptoms rule my life.

I don't post much but every few months I come to the forum and read. I have gathered a lot of interesting ideas. It saddens me to know POTS patients are not taken seriously with our symptoms and decreased quality of life. Potsplace.com and this forum are both sites we can go to and know we are not alone.

I got carried away answering your post. Don't know if this is what you were seeking out.

Mary

[EarthMother]

Best I can remember, I am 46. :-)

I was formally diagnosed a half dozen years back, though my medical records show things like "tachycardia on mild exersion" as early as my early 20's. Around that same time I was diagnosed with autoimmune thyroid (Hashimoto) and told by one young doctor that I could expect a lot of ups and downs ... but that menapause would be the most challenging.

I do believe in my case this most recent crash in 2007 which was the proverbial straw to my camel's back (i.e. the end of my career due to illness) has a lot to do with how autoimmune disease and autonomic imbalance play havvoc with hormone changes in perimenapause.

[Rene S.]

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 Maggie,

I just turned 50 in April and my symptoms started in October. I flunked the formal TTT in February. Prior to the dysautonomia, I was diagnosed with both fibro/cfs approx. 9 years ago.

Welcome to the boards. You will find wonderful information here with great supportive people who understand what you are going through.

Rene

[Stormie74]

I am another POTS person you can toss into the "Over 50" bucket! I am 53, though that's only a number.

(I keep telling myself that!)

I was just diagnosed within the last two weeks with POTS, thought I have had it my whole life, or as long as I can remember (no wise cracks about my age, please).

I'm located in Michigan as well, Maggie.

Caron Mosey, Ed.S.

[Notgivinup]

I will be 46. Was dx 3 years ago. Always healthy, till a virus and/or a car accident brought this on. Or maybe neither of those brought it on, who knows.

[familypast]

I'm 47 and newly diagnosed. However, I've had the problem since at least my 20's, or perhaps my teens.

Debbie

[dawn]

Hi Maggie,

I am almost 55. Was diagnosed at 37 but, I think I was born with POTS.

I have to say that now, after removing stress from my life (a difficult marriage) I am feeling much better.

My doctor for 18 years encouraged me to get a divorce, finally in February, I got up the courage to face life alone.

I am fortunate that beta blockers work well for me.

I have over the years learned to deal with all of the bizzare symptoms, but lack of stress is the key.

I have learned to just give anything stressful to God and let it go. Not easy, but I am stubborn. LOL.

Dawn

[kayjay]

Hello to all- I was glad to see this post because I always want good info. I am 36 and was just diagnosed this year. I have had problems with dysautonomia for at least 11 years.

Funny, when i went to the Mayo clinic the nurse told me that I would get better because "we don't see women in their 50's and 60's with POTS".

That confused me because the neurologist told me that I could do better--- but that I would most likely have this condition for the rest of my life.

Now because of all of you... I know who to believe.

I think many of us, regardless of age, realize after 10 years or so of dr. visits that they don't have all of the answers and we learn to just do the best that we can.

It seems to me that the people that really recover from POTS are those who develop it as teens perhaps during a growth spurt.

Anyway... now I know that moving our laundry room to the main floor is a good idea. I am hopeful but I don't want to have false hope.

Thanks- kari

[peppermint patty]

Hi Maggie! I am 49 and just was diagnosed with NCS this year (June). I am still trying to adjust to this illness. Some days are a lot better than others---currently not a good day. Nice to meet you, Pat

[Dawg Tired]

I was diagnosed with NCS in 2002 at the age of 43 - I'm now 50. Mine seemed to either come on after a virus or it had always been there and the virus exacerbated it.

Most of my life I had problems with bouts of tachy and fainting.

[icthus]

Hi Maggie -

I'm 58, I guess. It changes every year, for which I am very thankful as the alternative isn't so good for my family!

Your post says you are looking for support. Me too, only I'm not sure that what even means. What are you looking for?

A fellow quilter - of bygone days

Cathy

I just reread my post. 58. ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh That is soooooooooooooooooo olddddddddddddddddddddddd! I was just 25 a few years ago, or so it seems.

[StacyRN]

Hi! I'm new to the dinet forum, and I'm 49 years old, but feel 90... I have POTS. I finally found a doctor who knows about this today! He is starting me on midodrine and Verapamil (calcium-channel blocker), but I don't start until tomorrow... I HOPE they help! I was recently diagnosed, about a month ago, but have been really sick with it for 3 months now... but I'm pretty sure I've had it most of my life.

Does anyone else take calcium-channel blockers? Do they help?

[tinkerbella]

Hi! I'm new to the dinet forum, and I'm 49 years old, but feel 90... I have POTS. I finally found a doctor who knows about this today! He is starting me on midodrine and Verapamil (calcium-channel blocker), but I don't start until tomorrow... I HOPE they help! I was recently diagnosed, about a month ago, but have been really sick with it for 3 months now... but I'm pretty sure I've had it most of my life.

Does anyone else take calcium-channel blockers? Do they help?

Welcome StacyRN,

I take a calcium channel blocker for Pots and raynauds. It really helps my raynauds but, my doc thinks I'm going to have to put up with being cold and treat to cold before it hits as it conflicts with all my other meds and he feels it makes my already tahy condition worse.

I'll hate it when he pull the med as I'm still freezing cold.......burrrrrrrrrrr...... Neuro says I need more, but I's taking the most possible... Got to run for my cab to the hospital...

[mountain girl]

I am 46 and was diagnosed about a year ago at age 45. Like someone else mentioned, I feel much older now than before pots dx. For us women in this age group, I wonder if menopause improves symptoms any or if there is no hormonal connection.

[StacyRN]

I am 46 and was diagnosed about a year ago at age 45. Like someone else mentioned, I feel much older now than before pots dx. For us women in this age group, I wonder if menopause improves symptoms any or if there is no hormonal connection.

I wonder about menopause too... I started having really bad symptoms around this time also.

[Rafiki]

I am 51 and developed POTS a few months ago. I was also diagnosed with NMH but the doctor said I probably had that since childhood. I have always had a tendency to faint but have only done so maybe once or twice a year since I was 10. I really never thought anything about it. But after an ear infection in June, I was never able to get out of bed. Every time I did I was on the verge of fainting. I am postmenopausal and although have had no common problems (no hot flashes, mood swings, etc) doctor said low hormone levels could have contributed to both the POTS and NMH. I have started HRT, but can not tell a difference.

Debbie