POTS in older people

[Peggy]

How uncommon is it for a woman  75 years old to have POTS.

[Guest KiminOrlando]

I would say that it isn't impossible, but I would have a full check up because it could be a symptom of a yet to be discovered underlying condition. It happened to one of my mom's friends and it turned out to be an autoimmune disease. I also know someone who ended up discovering a correctable cardiovascular issue. 

I don't think it discriminates based on age, sex or anything else. Everyone is eligible. 

I don't know if that was the answer you were looking for or not. Pretty much they rule out everything else before they start looking for this, or at least that is my experience. 

Kim 

 

[StayAtHomeMom]

In theory it is possible but I think there would be an obvious cause. Definitely make the doctors check everything. That being said I think I read somewher that the older you get the harder it is for your body to push your blood around so I would think orthostatic hypotension would be more common then POTS.

[BuffRockChick]

It's possible, but another form of orthostatic intolerance may be more likely. Orthostatic hypotension would be more likely and can cause tachycardia as the body struggles to adjust.  A tilt table test would sort out which form of orthostatic intolerance you're suffering from.  

Please stay around while you explore what is wrong and update us!  The conditions I've read about that are similar to POTS have similar treatments and selfcare measures, so maybe you can glean some ideas that help you feel better.

[Lisakay]

On 6/5/2017 at 5:11 PM, KiminOrlando said:

I would say that it isn't impossible, but I would have a full check up because it could be a symptom of a yet to be discovered underlying condition. It happened to one of my mom's friends and it turned out to be an autoimmune disease. I also know someone who ended up discovering a correctable cardiovascular issue. 

I don't think it discriminates based on age, sex or anything else. Everyone is eligible. 

I don't know if that was the answer you were looking for or not. Pretty much they rule out everything else before they start looking for this, or at least that is my experience. 

Kim 

 

Im 48 and just came down with pots

My doctor wont run autoimmune tests on me!  He says oh it's just pots

. See your cardiologist.... Ughh 

What kind of autoimmune did your friend have?  I'm seriously beginning to think I should switch doctors even though I've had this Dr for 15 years

[Guest KiminOrlando]

Hi Lisakay. Second opinions are never a bad thing. I say this as someone who also has multiple autoimmune diseases. Often doctors find one thing wrong and assume that is it, but instead it is a symptom of a bigger problem. I have lupus and rheumatoid arthritis.  My mom's friend has Guillaine Barre (sp?) and her first symptoms were autonomic. She was in her 70s and she almost died before they figured it out. Her case became acute quickly, but if they had taken her seriously when she first went to the doctor they might have been able to start treatment sooner.

What makes you suspect you might have an autoimmune disease with POTS? I bet your story will be very familiar. 

Kim

[WinterSown]

I am 59 and was just diagnosed at the beginning of this year. I believe it is quite possible for an older woman to have POTS and that she may have had it for decades but it went undiagnosed and/or she has been treated for anxiety or hysteria in her past. I would certainly be insistent in giving a long and accurate history to a cardiologist or neurologist who understands POTS.

 

[Always hoping]

I was diagnosed at 44 and had been pretty sick for 4 years.  I now recognize that I had many minor symptoms since my early 20s.  While I hope that they check everything, I do believe that some people have POTS all their lives and just never get diagnosed.  Be well!

 

[Debbie Rose]

I was diaqnosed at 60 after 5 years of symptoms

[Flight272]

I don't know, but at 28 years old my cardiologist pooh-poohed my POTS and said it would probably go away when I reached menopause. But I also think he's an idiot. 

And there's more than one cause of POTS - the kind typical of young people might not have the same origin as POTS that suddenly appears in an elderly person. 

[Guest KiminOrlando]

Hi Flight272.

Yes, HE IS AN IDIOT!

I would sound incredulous when I repeat, "Don't worry. It will probably go away in 20 years." 

EXCEPT, I was told the same thing when I was 13. 

What other kind of patient do you tell not to worry and that it will probably go away on its own? Seriously, staying conscious is a luxury anyway.

I am 47. It hasn't gone away. I told my new GYN this prediction and she just rolled her eyes.

Oh My Goodness. I can't take this anymore. It is a good thing us ladies don't have anything important we have to do. Where is my fainting couch? Someone fetch me a cold drink.

Gggggrrrrrrrrrrrr!!!!!!

Kim 

[toomanyproblems]

I was diagnosed with POTS about three years ago but I feel pretty sure I've had it for at least ten years before now, which would put me at 53 when I first had definite symptoms I attribute to POTS. However I do also have a lot of autoimmune problems so lots of varied symptoms for over 30 years. Also, I recently got a very firm Ehlers-Danlos diagnosis by a leading expert, so I was obviously predisposed to POTS and might've had it for quite a long time before actual diagnosis.

I think it's possible to have a POTS diagnosis at 75 but probably not starting then. Lots of things cause dizziness at that age.   

[Flight272]

On 2017-6-20 at 0:57 AM, KiminOrlando said:

Hi Flight272.

Yes, HE IS AN IDIOT!

I would sound incredulous when I repeat, "Don't worry. It will probably go away in 20 years." 

EXCEPT, I was told the same thing when I was 13. 

What other kind of patient do you tell not to worry and that it will probably go away on its own? Seriously, staying conscious is a luxury anyway.

I am 47. It hasn't gone away. I told my new GYN this prediction and she just rolled her eyes.

Oh My Goodness. I can't take this anymore. It is a good thing us ladies don't have anything important we have to do. Where is my fainting couch? Someone fetch me a cold drink.

Gggggrrrrrrrrrrrr!!!!!!

Kim 

Haha! I laughed at the "staying conscious is a luxury anyway" bit! Spot on. Good to know other people understand the irritation at being told not to worry about barely having a life because it'll get better at menopause. So in 25 years I'll be fine? And what exactly am I supposed to do in the meantime? What would my life be like by that point even if it were true that it would go away? 

What about those studies that showed quality of life is similar in POTS to people with congestive heart failure? No one tells people with congestive heart failure, don't worry, it'll get better in 25 years because by then you'll probably have died of old age anyway. 

[Paula L]

I'm 65 now, and when I was younger, probably starting when I was 16, I often got light-headed and my vision would turn gray when I stood up. I also started having rare episodes of fainting that were a result of pain, either from severe menstrual cramps or strong intestinal pain. When I was in my 40s my doctor told me to keep hydrated to help avoid the fainting spells. Twice I've had episodes of near fainting after airplane trips, which I figured were because I was dehydrated. During these episodes my heart races, I sweat, I'm weak, am very nauseated, just feel generally horrible. I lay down until it passes, but I'm wiped out for the rest of the day. Daily, my heart rate often increases after I eat, lasting about 10 minutes. If I'm on my feet too long (stopping to talk to a neighbor while on a walk, for example), I start feeling yucky, I feel like I'm starting to get light-headed so I bend my legs and move until it eases up. When I get home I'm done in - not from the walk, but from the standing. I often get lots of upper body pains and aches, sometimes worrying me about my heart, but my heart is fine. I am frequently fatigued. Actually, I can't remember when I last had a day of carefree energy since my early 40s. I've often wondered about POTS because so many of the symptoms sound similar to what I experience. But that can be said of other conditions as well. I have a cardiologist, but feel like if I bring up POTS it won't be given more than cursory consideration. Is any of what I describe similar to your experience? I'm going though an episode where I'm spending a lot of time in bed, dozing and reading, and sleeping. This is the fifth day of terrible fatigue. It happens to me periodically, but usually only lasts about three days. On a positive note, my dog thinks it's great and stays in bed with me.

[Delta]

Hi, Paula!

Sorry to hear about your symptoms . . . some of them do sound very POTS-like.  I was diagnosed with POTS last year at age 56, after a sudden four-month barrage of many bizarre and frightening autonomic symptoms.  Like you, my heart rate would increase after I ate - the highest I ever clocked it at was 160-something very shortly after eating (I used one of those pulse-ox things you put on your finger tip).  I would get tachycardic just walking calmly through the house and the neuro who diagnosed me said I was tachycardic during my exam, just sitting there.  I, too, began getting fuzzy-headed and light-headed when standing - that is actually a pretty classic POTS symptom.  As you point out, it could be caused by other things, but you won't know if you don't investigate.

Also like you, I had some symptoms for a few years leading up to the four-month-long "attack".  I had lost my tolerance to heat - this is someone who thought nothing of sweating out in the summer sun, mowing the lawn, participating in some type of sports activity, etc.  But it got to where I couldn't even take a walk outside on a hot, sunny day without feeling as if someone pulled the plug on my energy - I'd feel completely sapped and like I had to get to where it was cooler, and fast.  I knew something was wrong, but I chalked it up to menopause because a couple of my friends who had been through it said their tolerance to heat decreased after menopause.  But this was ridiculous.  I also started having these weird "peeing episodes" - no UTIs involved - where I would pee over and over again, several times per hour, and then it would stop just as quickly as it started.

I get the occasional upper body aches as well.  Re: the dehydration, my POTS doc - a neuro - told me to stay well-hydrated because it helps keep your blood volume up, so that could explain why you become symptomatic when you are dehydrated.

I didn't get the fatigue at first, but I get it now and when I do I hit the bed - you learn to "go with the flow" with this, because it's what I like to call "predictably unpredictable"!  And yeh, my Toy Poodle loves to keep me company on those days!

You mentioned fainting when you had bad menstrual cramps - I never fainted, but I had several episodes between about age 16 through 22 where I had awful cramps and became very lightheaded and sweaty and thought I was going to pass out,  but I never did - the feeling would pass.  I don't relate it to POTS.  Before I went on the Pill, my periods were brutal.

So anyway, you have nothing to lose by asking your cardiologist about it.  Good luck and I hope you find out the cause of your symptoms!  Sorry for the long post!

 

[Paula L]

@Delta

Hi, Delta, and thank you. I appreciate you taking the time to give me something to learn from. After I fainted twice from cramps, my doctor put me on the pill and they helped so much.

The heat intolerance thing, which I have too, baffles me. I've always thrived in the heat, the hotter the better. When I was in my early 30s I became over-heated on a warm-hot summer day playing ping pong. I had never experienced that before, and I grew up in a hot climate. Since then I've had to really pace myself in the heat. Now it is much worse.

Ah, frequent peeing. Sometimes I have to go so often I feel like I may as well get a book and hang out on the toilet. It comes out of the blue and leaves the same way.

Last night, late at night, my heart was beating fast and wouldn't slow down and I was feeling palpitations and light-headed. I was pale. I wondered what I could do to feel better, then remembered I hadn't taken my beta blocker, which I take at night, and which I've taken since I had a heart attack several years ago (it didn't damage my heart and I now have a stent). Surprisingly, the beta blocker helped rather quickly. It occurred to me that the beta blocker may have been "masking" some orthostatic symptoms for about 6 years now.

I'm sorry I can't seem to keep things short, but on a final note, after last night's event, I had very strong shivering that lasted for about 15 minutes. I was freezing and shaking. I've experienced that before, but not often. Previously I assumed it was from anxiety, but last night I wasn't feeling anxious during the episode. I was feeling, this is tiresome, I just want to go to sleep, as I tried to ignore my pounding heart. And now today I feel like a wet towel. I don't know if shivering is a possible symptom of POTS.

P.S. My dog is half miniature poodle, a total joy.

[Delta]

51 minutes ago, Paula L said:

@Delta

Hi, Delta, and thank you. I appreciate you taking the time to give me something to learn from. After I fainted twice from cramps, my doctor put me on the pill and they helped so much.

The heat intolerance thing, which I have too, baffles me. I've always thrived in the heat, the hotter the better. When I was in my early 30s I became over-heated on a warm-hot summer day playing ping pong. I had never experienced that before, and I grew up in a hot climate. Since then I've had to really pace myself in the heat. Now it is much worse.

Ah, frequent peeing. Sometimes I have to go so often I feel like I may as well get a book and hang out on the toilet. It comes out of the blue and leaves the same way.

Last night, late at night, my heart was beating fast and wouldn't slow down and I was feeling palpitations and light-headed. I was pale. I wondered what I could do to feel better, then remembered I hadn't taken my beta blocker, which I take at night, and which I've taken since I had a heart attack several years ago (it didn't damage my heart and I now have a stent). Surprisingly, the beta blocker helped rather quickly. It occurred to me that the beta blocker may have been "masking" some orthostatic symptoms for about 6 years now.

I'm sorry I can't seem to keep things short, but on a final note, after last night's event, I had very strong shivering that lasted for about 15 minutes. I was freezing and shaking. I've experienced that before, but not often. Previously I assumed it was from anxiety, but last night I wasn't feeling anxious during the episode. I was feeling, this is tiresome, I just want to go to sleep, as I tried to ignore my pounding heart. And now today I feel like a wet towel. I don't know if shivering is a possible symptom of POTS.

P.S. My dog is half miniature poodle, a total joy.

Oh, I love that your dog is also a Poodle and, yes, a total joy!! 

I've had shivering a couple of times with this and I have two theories - first is that sometimes I go from being really warm to really cold, and have shivered when I felt too cold.  I'm not sure if that is POTS-related or hot flashes, because I did start getting hot flashes when I was 50.  Whether or not it's menopausal hot flashes, I suspect it may be related to whatever causes the heat intolerance.  The other possibility is that the shivers come from over-stimulation of the autonomic nervous system - adrenaline.  This happened to me a couple of times before I was diagnosed and taking any meds (I also take a beta blocker as prescribed by my POTS doc), and you don't have to be anxious for it to happen.  I remember my husband saying to me, "You're shaking like a leaf!"

You bring up a good point about the possibility of your beta blocker masking symptoms.  I keep mine on a table by the bed with water (that way it's less likely that I will forget to take it, ha ha!) and take it an hour or two before I actually get out of bed and start my day and that way it's well "on board" before I start agitating my autonomic nervous system!  

I could go on and on!  Feel free to message me if you'd ever like to discuss at greater length, or for support.  Good health to you - and your Poodle!!

[Paula L]

Thanks, you too! Your adrenaline theory makes sense to me. It actually may also explain the heart pounding and other symptoms too.

[WinterSown]

Not only is this possible, it was the basis of a DINET survey I wrote and analyzed.

Yes, most certainly dysautonomia is in the older female population with thirty percent of us being diagnosed post menopausal.

[MomtoGiuliana]

We've been maintaining an informal poll of DINET members.

https://www.dinet.org/forums/topic/29054-poll-dinet-members/

13% indicate a diagnosis after age 50.

[Dena]

I’m 71 and have pots symptoms of varying degrees for over a decade. Finally diagnosed by a cardiologist in 2013. Because by this time my symptoms would come and go I was just advised to drink more water and eat more salt. I experienced what I would call flare-ups when symptoms were severe. This has gone on for years but more recently more often and more debilitating.  I’m planning to visit Vandy very soon as I seem to be getting worse and need more answers.