Who is the oldest person with POTS here?

[dianaD]

Hi all,

I know that POTS usually affects women of pre-menopause age, and most everyone here seems pretty young.

I'm 48 years old. Am Ithe oldest one here? If so, should that give me some hope that this will improve soon, maybe when menopause kicks in?

Is there anyone here in their 50's or 60's or higher?

Thanks!

Diana

[taylortotmom]

Although I am 31, I had a total hysterectomy last summer and regret to inform that despite "going through the change" the dysautonomia is still going strong. Sorry to be the bearer of bad news. Although, other people might have had other expereinces.

Carmen

[MightyMouse]

I was in medically induced menopause for several months (lupron injections) and I actually got worse

I'll be 41 in about 8 weeks. Nina

[morgan617]

I'm 50 and getting worse, sorry.. hotflashmorgan

[Miriam Poorman-Knox]

I'll be 50 on the 28th. I was referred to a psychiatrist for meds. I had difficulty finding one in my area. I was referred to a Dr. Called, his nurse said that they only see people 60 or older. I explained my situation to her. She scheduled me for Nov. She asked me to bring my neuro-psch test results and I asked if I should bring info on POTS? She said no that having so many people over 60 these doctors know about dysautonomias as they are so prevalent!!!!!! Will let you know. Miriam

[Dawg Tired]

I'm 46. Just had 10th anniversary of my hysterectomy with bilateral oopherectomy. Was diagnosed 3 years ago.

[briarrose]

My mom is in her early 60's and has Dysautonomia/NCS & mild POTS, sorry.

[futurehope]

Menopause triggered the onset of a much more debilitating condition. (I may have had a mild dysautonomia before that but was fully functional.) I was 51 when I was diagnosed and am 54 now. I see a slow deterioration since menopause and no improvement. Who are these doctors that say that this improves with age? Or better yet, improves with time?! They haven't spoken to me.

[michiganjan]

I am 58. POTS has definitely gotten worse for me as I age. Dr. Grubb once told me it would get worse with menopause. Back when I was 50 my doc did not want me to experience menopause on top of my POTS symptoms so put me on hormone replacement (HRT) prematurely. I was not at that time even perimenopausal.

I took the HRT for 6 years. After the HERS studies which showed that there were more risks to HRt than they had thought, I went off the HRT. I couldn't sleep and I was wet with sweat all the time. I finally couldn't stand it any more so went back on the HRT. I reduced it very gradually. I took me 2 years of reducing the dose very gradually and finally, about 3 months ago I finally stopped the HRT (estrogen and progesterone) completely.

Guess what? I did not have any menopausal symptoms but a month later I had a period. I hadn't had any on the HRT. So the doc said something was wrong and did an ultrasound which showed a large ovarian cyst and the lining of my uterus was too thick. This was a month after the period stopped. So I had a biopsy of the lining of the uterus and a cancer blood test. Both were fine. So then she had me take a round of progesterone and I had another period. She did another ultrasound. The cyst was gone and the utering lining was thin. The cyst had been a functional one, meaning I had ovulated and had a period after stopping the HRT.

Then I talked to my mother who told me she had her last period at age 63! This is not fun! So here I am, age 58, not taking hormones and not having menopausal symptoms. But having periods. Anyway the doc said it is not normal, and I will have to take a round of progerterone every 3 months after having my last period for awhile. That way the lining of the uterus won't build up if I fail to have a period on my own.

I know, I know, I took a side trip here. Sorry about that.

I guess Briarrose's mother has me beat in terms of age but not by much. I have had POTS at least since my early 30s. And it has definitely worsoned over time. I can do much less now than I could when I was younger. However, menopause hasn't seemed to have anything to do with it.

Can you imagine ovulating at age 58? Of course my mother has me beat at 63!

Michigan Jan

[Skeeter]

Hi, I will be 51 in a couple of weeks and mine also has gotten worse with age, Dr. Grubb recommended a couple of years ago taking prempro. I am on a low dose and they plan on keeping me on it for a few more years only to try and help my horomones stablize so the Pots symptons and all that goes with it do not get worse. It has helped some I am sure. Just really don't like having more problems as I get older. All you can do is try and make the best of each day...somedays all I want to do is sleep. That is the one thing that is the hardest right now i can't imagine what it would feel like to have energy again. Sorry I couldn't right that it gets better with age. I am like the others can't imagine why someone would say that. Hang in there...Becki

[dizzygirl]

Boy this is kinda depressing!! my cardio doc who first diagnosed me with pots.. told me that you dont really see alot of women over the age of 50 w/pots.. I think maybe he was trying to cheer me up???...

[BuddyLeesWife]

The Vanderbilt Autonomic Dysfunction Center has begun studying the effect of estrogen on orthostatic intolerance. I don't know if they have much information to share yet but following is their research topic and the link to their website.

Hormonal influences on autonomic function

A recent addition to our research endeavors is investigation into the role of reproductive hormones, estrogen in particular, in the onset and persistence of symptoms experienced by patients diagnosed with orthostatic intolerance. Women of child-bearing age are the primary patient population of this disorder, outnumbering men 6:1. While the preponderance of women suggests a link with estrogen, and it is well recognized that estrogen has broad ranging effects in the cardiovascular, central and peripheral nervous systems, little information is currently available linking this hormone to the pathophysiology of orthostatic intolerance. A focus of future research, therefore, is to determine whether there is a cyclical pattern to the symptoms of orthostatic intolerance in women, to determine whether there is an imbalance in the hypothalamic-pituitary-ovarian axis that could affect autonomic function, and to investigate the role of estrogen in autonomic regulation of heart rate and blood pressure in patients and normal controls.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4784

[MomtoGiuliana]

I don?t want this thread to unnecessarily discourage or depress anyone. There is little understood about the long-term outlook for POTS?is my understanding. But there is reason for hope.

My POTS specialist continues to maintain that MOST people diagnosed with it improve to a functional level?the average time for ?recovery? being four years. Some people do not improve, nor are helped by the various meds currently used to treat POTS. Many people, even those who improve to a functional level, have relapses?which can be associated with surgery or menopause or other things. He said to expect my symptoms to flare with menopause.

Perhaps he is giving me false hope, but I want to believe he is accurately describing his observations and understanding of the literature.

Katherine

[biatecki]

I was 53 and just starting menopause when I had the flu shot that kicked off my autonomic neuropathy/POTS. I`m 5 years into it now and still very symptomatic but better than I was ...with me there was an improvement after the first 2 year mark but none since . I suspect this is how I will be the rest of my life . Going through menopause didnt really add significantly to my symptoms.

Margaret