Older people with POTS?

[JenniferInOhio]

I've read that the average age of POTS people are 15-50. I know there are younger people out there. What about older people? Does it get worse as you get older? If the average age is 50, does that mean people don't live that long with it?

[Ernie]

Hi,

Some of my relatives with POTS and NCS are in their 80s.

Ernie

[SunsetParadise49]

I was told that you will have it the rest of your life, that it's chronic. Maybe some people are different?!?!

[steph37822]

oops

[MomtoGiuliana]

This has always been puzzling to me too. Does it tend to go away as you age? My specialist has female patients in their 60's with POTS, he told me, who have had it off and on for most of their lives. He does not believe it affects life expectancy. But, there is a lot more research that is needed, certainly.

I believe my grandmother had it, undiagnosed. She lived into her late 70's. She died of Alzheimer's and cancer. She never had any cardiac problems or complications--not that they are established to be connected with POTS!

Katherine

[dizzygirl]

well

when i was first diagnosed with POTS.. my cardiologist told me at the time.. that the one good thing is that you dont see alot of 50 yr old women with pots.. and that I will "grow out of it"

In my case that is not true..I have since seen the "specailist" inpots who have told me differently...

My grandmother is 70 and my mother is 41.. and we belive that they both have pots.. even though they have not been "officially"diagnosed yet..

[Gena]

I've been wondering about this question too! Thanks for posting it. I guess you don't see a lot of 80 year olds posting stuff on the internet or discussion forums, and I bet a lot of 80 plus year olds who do have POTs might not even know it since doctors are just learning about this mysterious illness. So while they're may be plenty of potsy seniors out there, they just might not be here on DINET. It would be interesting to see if they've done any studies on POTs and how long people live with it. I want to live to be at least 100! (But some days it feels like I'm lucky if I make it through the night!)

Gena

[futurehope]

I was diagnosed at 51 years of age, am now 54, and I plan on living the usual life-span of most members of my family (God willing). I think it is futile to concern oneself with statistics anyway. Each one of us is unique and no one can predict with any certainty the lifespan of anyone.

[Michelle Sawicki]

I think older people are less likely to be on our forum because they are less likely to be on the Internet altogether.

Michelle

[goldicedance]

I was diagnosed with POTS in 1996 at age 46.

[persephone]

I've been told again and again that it at least lessens in severity as we get older--which leads me to the conclusion that it MUST be hormone related- especially as most sufferers are female and of menstruating age (15-50).

It doesn't make me feel any better when doctors say "we're sure it will go away....one day!"

[Sophia3]

Dr. Grubb said to expect HUGE changes, probably worse after menopause. I am 48.

I am FIGHTING the urge to be bedridden and he said I was doing all I could to avoid that....I have dreadful amounts of energy but push on my good days.

My dreams of working even part time again died YEARS ago...so I take it a day at a time...or an hour at a time.

My last few periods have made me TOTALLY ill...especially my latest one...so I am concerne greatly of the hormonal connection.

[JenniferInOhio]

Thanks for your replies. Oh, and I don't consider 50 old

[MomtoGiuliana]

Regarding menopause--my POTS specialist also told me to expect POTS to be worse during menopause (he didn't say it would be worse after, per se). I am sure this differs from person to person and this is a generalization. Some of us see a clear hormonal connection and others don't. My docror also said that most women with POTS feel best during pregnancy--and I was the total opposite (as I know others have been too on this forum). So, I think at this point there just is not enough information to predict the course of anyone's condition. What is clear is that it is not life-threatening.

Katherine

[Guest Finrussak]

I had a great aunt with the same "crazy" symptoms of near faints, heart racing etc..but they just chalked it up to hysteria...she died 4 yrs ago at age 86 after stroke complications...her cardiologist placed a pacemaker/defibrillator at age 76 "just to make her less nervous" according to her sister...yet it never went off. I think the problem is that men of a certain age avoid doctors or "tough it out" ( my own dad age 75 says he sometimes feels light headed but he 'gets mad' at himself and pushes thru) and women of a certain age are told its nerves etc...Also by the time you reach your 70's chances are real good youll be on various meds for many things and some of the meds may either worsen or improve the undiagnosed POTS stuff...there is a definite hormonal connection for many...but like everything else about this frustrating illness, for everyone its different.

As for life expectancy, doesnt it have a lot to do with what else we have??? Like if we have another disease that affects cardiac function, the heart will be more taxed by the tachy episodes...or if we have immune probs, the POTS can make us even more fragile....I think that there's not enough info about just how hard all this can be on anyone's body...which is why I feel I have to stay as strong as I can...do what I can to keep muscles ( even if like today its 3 measly arm raises), and to eat well, etc. To give my body a fighting chance.

Itd be great if we could all try to keep a running journal...for years if possible ( yeah I know, the scientist in me is busting out...get more data, understand whats happening), then have the Drs who are in the loop share. We have been trying for this the last 10 YEARS in the Lymie community...and we still arent quite there...NO protocol for treatment or even diagnosis, politics about even who can/should be treated past a certain point...sigh.