Down The Road

[masumeh]

Just wondering what the long term is like with POTS, what it's like in "over the hill" stages of life, senior citizenish ages, and beyond... I imagine we have increased risk for hip fractures at older ages, since we fall/faint. And I've read that the most common cause of death among POTS sufferers is a PE, that we are not prone to strokes or heart attacks. But I'm wondering still, quality of life wise, symptoms wise, etc... What is it like in the long term. Since most senior citizens don't use the internet actively, this might be the wrong place to pose the question....but does anyone know people who are over 60 w/POTS? Or how about a smaller scale, like 15 years down the road, do symptoms stay manageable, etc.??

[futurehope]

I don't know what to tell you. I'm 55 years old, diagnosed at 51. I am a walking enigma wrapped up in a riddle trying to figure this all out.

I wish I knew the answers to your questions.

It sure seems that everyone has a different story to tell. As for me, I am currently taking .05 mg florinef daily, and drinking 1/4 tsp baking soda in water before I go to bed and upon arising (for salt). I also remain acutely aware of my calcium intake, as florinef depletes calcium and I know my bones are losing mass already.

I also struggle with interstitial cystitis, a chronic inflammation of the bladder. I find myself experimenting to keep that problem at bay as well as the POTS.

I have not arrived at the perfect combo of meds to get me where I want to be but I have not given up hope.

I'm constantly on the lookout for new avenues to explore with my doctor.

As for what you have to look forward to, my neuro said he has patients of all ages and men as well as women, but many of his POTS patients tend to be young women. I pray your illness departs as soon as possible and that you become one of the success stories. Maybe someone else here can answer you as you what happened to them if this all began at a young age?

Best wishes.

[ellen]

I have had POTS for over 15 years but was not diagnosed until last year at 50. I was so frustrated from seeking a diagnosis for so many years, that I gave up hope and learned to live with my condition.

I suspect there are others in my age group who have had the same experience and are living without any clue that POTS is the cause of their illness. Perhaps the fear of being labeled a hypochondriac keeps them from mentioning it to their doctor.

I don't know how anyone can claim to know the long term effects of POTS since it has only recently been recognized, and there seems to be several forms of the syndrome. I feel I have improved with time, but I still have to pace myself, watch my fluid intake, rest often, etc. What really bothers me is the mental fog-memory loss. O well, maybe they'll find a pill for that.

[MightyMouse]

I'm 41, and have been symptomatic 40+ years. I have early osteoporosis, and have lost almost 2 inches of my already meager height. Other than that, I'm doing pretty well --all things considered.

Nina

[MNsue]

I have had POTS since I was 24, I am now 40. I also was diagnosed in February of this year. I have had periods of complete remission, and some unrelenting bad spells (Due to non-treatment). We are pretty sure my POTS is the results of the ebstein barr virus messing with my immune system. I am working with an immunologist with hopes of improving the neuropathy that developed this year.

When I was first diagnosed, I spent a lot of time wondering what was going to happen to me and sometimes I still do.

I have a friend with MS, and she has helped me to understand that everyone's illness takes its own path. The doctors can not predict how her MS will impact her as she ages, just as I think our doctors can not predict the future of our illness.

I wish for a cure, but in the meantime, I try and make every good day count.

Rhonda

[Tanzanite]

Not over 50 but had it as long as I can remember in a milder form until now. I just have a Q. What's PE?

[masumeh]

Not over 50 but had it as long as I can remember in a milder form until now. I just have a Q. What's PE?

PE stands for Pulmonary Embolism (blood clot that starts in the veins of the legs and shoots up into the lungs, 10% fatality rate).

[willows]

I fit into both categories, I'm over 50 and have had Pots for 35 to 40 years + .

I'm getting worse as I get older now, but life is still great.

I have to take soluble Aspirin each day because I am at risk of stoke and heart attack, I've already had heart failure and when my son was born 15 + years ago they did wonder if I had a very mini stoke as I had pre eclampsia really badly and now sometimes I forget words and things that I'm doing.

Also recently I had a day when I couldnt move my left side properly , was in such pain and I dribbled a bit !!! not pleasent at all , but I'm OK again now.

I fall a lot and have broken so far; my right ankle , wrist hand............always put this side down first I've injured my back and slipped 3 disc's , which have been welded together ( if you know what I mean )

Lifeis hard after all these years of bugs, falls, tiredness and constant pain.............but life is what you make it , and I'm always happy and always up to something

Willows.............just super glued herself into a tea cup !!!! ( dont ask )

[MomtoGiuliana]

My POTS specialist has patients in their 60s and older. He does not believe it impacts longevity, nor is there a predictable path. He is very aware of the extent to which it does or can affect quality of life at any age, however, especially if undiagnosed and untreated. He stronly recommends that I see him once a year, and more frequently if anything changes in my symptoms.

Katherine

[rdslots]

Diagnosed at 48, three years ago, and have been on a roller coaster ride since.

It does seem like this past year has been the best in terms of getting the meds straight -- at least 'straight enough' to give me some semblance of normalcy. I have recently gone back into the classroom, even, on a limited basis, as a substitute teacher, so I really feel encouraged.

I think the real key is finding a DR (and it took me three years) who will work with you, is willing to educate him/herself on the disorder, and will listen to you (and others like us) as to what you think might help you -- of course, that means doing some homework, yourself, and learning to express your concerns/wishes, etc., without letting your own frustration over the whole situation dominate.

I seem to learn from others who offer suggestions, share past experiences, from reading and researching on my own, conferring with doctors (a cardiologist and a neurologist), and being willing to try different things. It has been the MOST difficult thing I have ever had to deal with, because I had been used to medical problems being 'fixed,' and dysautonomias are never fixed -- just managed. It took me a long time to accept that.

[Sophia3]

I have had a mild ANS problem my entire life but until dx and looking back at my childhood, did not connect the dots. Dx with CFS in mid 80's.

Was able to control it working odd hour jobs and LOTS OF SLEEP. Then in 1990 insomnia got so bad, the fatigue forced me to take time off work. 5 months later was on Premature Soc sec. 16 years later, progressing...but not sure why. Dr. Grubb told me some get worse as they get ready for menopause and worse changes DURING or after menopause.

It is VERY SOCIALLY and financially debilitating...for me anyway. It stinks not being able to go to the grocery when you need to let alone commit to social outing or part time job. I have premature bone loss as well and have started exercise.

I make myself exercise but it does not help fatigue and can worsen it but I knw I still need to do it.

So many worsen with age. Mine hit me gradually and a form ANS dx did not come until 1998.

If you had a SUDDEN ONSET, your odds for improvement are better.

But honestly, nobody really knows..not even the specialist.

Good luck

[Guest sonotech]

Well, I am only 34, but I have had POTS since my "pre-teen" years and it has only progressed. Just within the last year I have had to stop working completely and file for disability.

I also already have osteoporosis, so the future should be "interesting".

[dizzygirl]

I have had pots my entire life... though did not know that it was pots.. I was diagnosed with pots when i was 20 years old.... and i am now 24 soon to be 25 in a few months..

my pots symptoms have gottne worse over the past few years.. but i believe that there is something else going on aside from pots.. causing it to kick me in the rear and be in such an uproar..what that something else is i dont really know..

[Sunfish]

my diagnosis is no longer POTS but i just wanted to chime in that i have never read or heard of pulminary embolism risk increasing for those with POTS. i'd be curious as to where you got this info? but, like others have said, POTS can DEFINITELY be life-altering/limiting but it isn't life-shortening. perhaps you read something about other autonomic dysfunctions that have different prognoses/courses?

and things seem to differ from one extreme to the other in terms of people getting better, worse, staying the same, having ups & downs, etc. so unfortunately for each individual it tends to be an ongoing surprise .

melissa

[MightyMouse]

I'm with Melissa on this one--I've not read any research indicating that embolisms are a risk for our group. Stroke, however, is always a consideration with people with poorly managed blood pressure, and extreme highs and lows of bp. However, with good medical management of bp and hr, lifespan for our group is probably normal if not close to "normal."

Sophia is quite correct that the social and financial issues can be devastating--and in combination with that, so can depression, which is an issue to be aware of with any long-term illness.

Nina

[Tanzanite]

Thanks for answering my question about what PE is. The last time I heard of PE is when I was running around a field at school (and nearly keeling over afterwards LOL).