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Sorry if this seems a little morbid, I'm not trying to be, just realistic.

Do WE (those of us with autonomic issues) end up getting old? At a certain age, do we just start breaking down and get severe medical issues?

I'm hoping that this is simply a forum demographic thing where older sufferers just don't use the computer like younger generations do.

How old are you and what is your state of health (severe diagnosis other than or caused by POTS)?

I'm 39 and have stage 3 kidney disease of unknown cause.

***POLL HAS BEEN UPDATED WITH 2 NEW CHOICES***

Edited by firewatcher
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Firewatcher, I have wondered the same thing. I would think that we would be at greater risk for a host of problems- blood pressure can mess everything up. My grandmother died suddenly in her 40's. she had recently been put on BP meds. I think she may have had pots. Very sorry about the kidney thing. That's really hard.

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No, not morbid- just realistic, Jennifer :rolleyes: I've been wondering the same thing lately. Despite my autonomic stuff and associated disorders- MCAD, severe reynauds, etc., I've worked really, really hard to take good care of my 48.5 y/o self. I exercise, eat well, have a very healthy weight, low cholesterol, etc. It seemed even more important with my underlying health issues to try to control what I can.

I have been shocked with some test results that I've been getting lately- diastolic dysfunction-stage one heart failure? Possible pulmonary arterial hypertension, huh?

So much of this stuff seems to be complications of connective tissue disease which so many of us have...

On the other hand, my mother, 73, most certainly has some form of autonomic dysfunction (not formerly DXed) as does my maternal grandmother, 93, (also not formerly DXed.) They're still kickin' it. I hope I will be too at their age :D I hope to hear from some seniors!

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Oh great, so far, I'm the "senior" at 51! :D

Actually, I am NEVER sick. I have had ONE cold in the last 15 years. I did have my stomach issues before POTS, but it wasn't slowing my life down. Besides the stomach issues, I probably would never go to the doctor except for my yearly gyn appointments.

Of course, with my POTS, I feel like now my major systems are vulnerable, like my heart. That is now what I worry most about.

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I've wondered the same thing. I'm 34 with PAF. I also have MVP with regurgitation. I became more worried about the future when my stomach & bowels stopped working. I honestly can't imagine everything holding up until I'm elderly, but I'm gonna hope & pray for the best! :)

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I am middle aged. Just keep your bodies as healthy as you can. I take supplements to help me be as strong and keep my immune system as healthy as I can. A good doctor can help you with supplements and you can support your body. Blood tests can help tell you what you need. Vit. D, B12, etc. Very important to really care for your body. Stay postitive, I have had CFS for 19 years, POTS for about two. I have had other problems. Sometimes we get a hard road,like many people, but we can handle it, we are strong.

healing.jpg

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I admit to worrying about this too. Mainly the outlook for heart disease b/c of variable blood pressure. Or if I develop ANOTHER medical problem, how the problems may interact. I do think we have to take extra good care of ourselves.

I know one person on here has said her grandmother, who is in her 80's, has POTS.

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I didn't quite fit your questions. I think I was probably born with it, but don't know for sure. Also I do have several other illnesses the most recent diagnosis is a primary immune defeciency, but I also have pcos, high insulin, metabolic syndrome. I however think they are all related to pots symptoms.

I found out that there are many known and unknown autoimmune diseases that are associated with primary immune defeciencies. The small fiber damage causing my hyperandregenic pots symptoms is autoimmune. I'm now 53, but I was told had the cvid gone untreated I would have eventually got an infection or lymphoma and could die.

So, you could use the question, other major illness that is most likely related.

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I didn't quite fit your questions. I think I was probably born with it, but don't know for sure. Also I do have several other illnesses the most recent diagnosis is a primary immune defeciency, but I also have pcos, high insulin, metabolic syndrome. I however think they are all related to pots symptoms.

I found out that there are many known and unknown autoimmune diseases that are associated with primary immune defeciencies. The small fiber damage causing my hyperandregenic pots symptoms is autoimmune. I'm now 53, but I was told had the cvid gone untreated I would have eventually got an infection or lymphoma and could die.

So, you could use the question, other major illness that is most likely related.

Actually I think that many of us have "unrelated" health issues that actually ARE related to our autonomic dysfunction. My cardiologist calls it "end organ damage" from the wonkiness brought on by POTS. I don't think that ANS dysfunction has been studied long enough to develop any prognosis or list of complications brought on by autonomic issues, but I'd be willing to bet that there are long term complications.

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At one time diabetes was thought to be a mental illness. Over time it was understood to be a physical condition--with potential complications if not treated. There may be some parallels with POTS, or not. I think the thing with POTS/dysautonomia that is different is that the systems affected and severity of symptoms seem to vary, sometimes quite dramatically, from patient to patient. It has clearly more than one cause, furthermore. So it seems that prognosis will always be more difficult because of this.

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I talked with my Dad about this today. He and I have been wondering the same kind of thing. I'm 23. He brought up that older people may have just had to live with it. POTS is a relatively new thing. As far as I know it's only really been looked at for about 20 years. I imagine that people who have been sick for 30 years or so have given up on finding out what is wrong, so they haven't been labeled and haven't found their way here. It's just a though, but seemed logical to me.

~nancy

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I talked with my Dad about this today. He and I have been wondering the same kind of thing. I'm 23. He brought up that older people may have just had to live with it. POTS is a relatively new thing. As far as I know it's only really been looked at for about 20 years.

I think you might find this article on dysautonomia interesting. The cardiologist author maintains that it is a new name for an old problem previously called neurasthenia.

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My grandmother raised me and she and I were best friends. I cannot tell you how many times she fainted over the years. Plus, she had frequent bouts of diarrhea. And those were the symptoms I KNEW about. As I look back, these episodes were likely triggered by stress and she had plenty. She would always smile and make some excuse because she didn't want to scare me, bless her heart.

This wonderful woman lived to be 85 years old and was active and happy till she had a hemorrhagic stroke. I think she may have had some form of dys, it just makes sense after reflecting on her history. I know very little about my parents' medical history but what I do know would make me suspicious of dys in at least my mother.

If I can be half the woman my grandmother was then I will be blessed. And 85 years, well I'd take that any day!

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I've seen this article before- although it's recently been updated... Needs more updating as far as I'm concerned :blink: I don't like the fact that the FIRST 3 meds listed as treatment are anti-depressants, SSRI's and anti-anxiety medicine. If I knew nothing about this condition, I would assume it is mostly psychological after reading this article. The other thing I don't love is the section on DXing dysautonomia. Has this "expert" ever heard of a TTT??? And the description of the specific dysfunctions is woefully lacking.

Still, thanks for sharing it, Reen. Gives a good historical perspective on dysautonomia even if the current medical facts are lacking. Hard to take this author's perspective on prognosis seriously B)

Julie

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Was it here that I read that they are finding out that SSRI's work in different ways than they first realized.

I think the effect of them is much more physiological than psychological. They actually work in the nerve cells if I am not mistaken not only in the brain itself and they not only help to correct a deficit of serotonin but build new nerve pathways.

I wish I could find that info to share-is that familiar to anyone else?

I know when I read it I was fascinated.

They do not know why they help with POTS-they just know they work is what I was told.

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I think both my mother and maternal grandmother have POTS like issues - but they were never addressed. My mother (50s) won't go to doctors and my grandmother has a host of other issues including heart murmur and fibro (80s) but she is still alive.

My grandmother had a 'lower-quality' of life from all her ailments, which is sad. But she's still around in her 80s.

I hate feeling crappy in my 30s. :angry:

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Was it here that I read that they are finding out that SSRI's work in different ways than they first realized.

I think the effect of them is much more physiological than psychological. They actually work in the nerve cells if I am not mistaken not only in the brain itself and they not only help to correct a deficit of serotonin but build new nerve pathways.

I wish I could find that info to share-is that familiar to anyone else?

I know when I read it I was fascinated.

They do not know why they help with POTS-they just know they work is what I was told.

Yes, I have read something about that too. Taking an SSRI causes some permanent changes--but not sure of the nature of these changes. Correct, SSRI's help about 50% of POTS patients according to published literature...

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I was re-reading the old newsletters and came across this question and response in the Fall 2009 issue:

stacyrn:

If a person has POTS for years, does the tachycardia shorten your lifespan? I am an RN trying to cope with 12 hour shifts and POTS. Am I making the POTS worse by pushing myself so hard?

speaker: Dr. Fredrick Jaeger:

Since our understanding of the importance of dysautonomia such as POTS is relatively recent, there are no long term studies on survival. However - as I indicated in a previous question there is a high incidence of normalization of

heart rate or resolution. My suspicion is that there is probably no reduction in survival assuming that the rest of the cardiovascular system and structure is normal. Frequently patients need to accommodate their work schedule around their symptoms.

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I know at least in theory, POTS is chronic, not terminal. But I have personally had a couple of close calls, with my BP flat-lining. And I am currently in the middle of an unexplained weight loss slide, and am quickly running out of room to fall. I hope and pray better research, better treatments come along...

Sandy

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I'm 32 and my functioning is the lowest it's been so far, unable to drive or work. I also was diagnosed with Hodgkin's lymphoma a few years ago and was told it was unrelated. but i really wonder about the immune component. my pots seemed to come on after a virus at the age of 16...symptoms worsening each year.. then by 29 was diagnosed with cancer... i dont know if it was just my body breaking down from trying to "push through" all those years... or if the same immune issue that caused my response to the virus.. or the same virus itself predisposed me to both conditions..

But yea, i worry about if this is what my functioning is like now.. .and the 70,80 yr old seniors i have to ride the bus with are functioning better than me,.... what the heck am i going to be like if i get to their age?

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OK, I have had POTS since I was 20 years old and am 55 years old. I am an advocate that has traveled the US for treatment.

If you are OK with hearing what can happen after 35 years with this (it is ugly), scroll down. If it will upset you, I suggest you don't.

PS - firewalker's pots doctors are not giving her any ideas on the kidney failure, which I find appalling. I keep her in my prayers.

I didn't get significant cardiac symptoms until I was 27 - tachycardia, low and high bp, constant hospitalizations for dehydration. Had to stop working at 36; starting syncoping at 39. Lost all blood pressure control (swings of 90 degrees sitting and standing) at 44. Heart failure, stage two, at age of 53, unable to breath well lying down or do stairs now, and now...

I have SEVERE left ventricular diastolic dysfunction, two heart attacks so far this year from coronary spasms, continued coronary spasms called prinzmetal angina that are caused by too much norepinephrine, lost my hearing to the high blood pressure and wear hearing aids, car wrecks blacking out with POTS, fluid around my heart, shortness of breath, falling often (vertigo and balance and I syncope) and the rest of the crap we all deal with.

I have had to have surgery on my rectum as it continuously rips from IBSyndrome from POTS. I was hospitalized so many times for dehydration, starting in 1990, that I gave up and now get IVs twice a week. I have shingles approximately five times a year, every year.

I developed hyponatremia and almost died. I was in the Cleveland Clinic seeking treatment for this for nine weeks with no avail. I had to again get saline IVs to stay alive.

I have complex regional pain syndrome in both my feet and right arm - this is a condition that usually happens to people who have had a long history of high sympathetic activity and high norepinephrine levels. I can only use my right arm a little each day. My feet got so bad the the sole of my right foot split in two putting me in a wheelchair and in constant pain.

I have uncontrolled hypertension to the point where it occurs where I have a hypertensive crisis least once a week - we are talking bp of at least 220/120-130. My doctors have stated that they will not treat my BP unless it is over 200/100 in that I have so much cardiac damage that this the the best I can expect. In October, for example, I spent five days in intensive coronary care with bp as high as 250/118 with no help - they released me with just as high bp.

This week I missed my usual IV time by three days and had angina, very high bp, nausea, sweating and had to be evaluated for a heart attack, again just for missing an IV by a few days.

All the regular stuff (gastroparesis, constipation, nausea, cold intolerance, sweating, headaches and BIG TIME Brain fog - still continue).

I have actively tried to get better - a patient of Emory University in Atlanta, Mayo Clinics, Rochester and Jacksonville, Cleveland Clinic and Vanderbilt. No help yet. Stats on folks with POTS, CFS and who have developed heart failure like myself average a life span on only 59 years.

This doesn't have to happen to you - YOU can be your own advocate and work hard to follow the rules and ask the right questions - and spend the right money. WE know lots more about POTS than when I got sick and it didn't even have a name - don't give up, every!

Disclaimer: all cases are different. But I would like to have know at 30 that I could end up as sick as I am now - I would have taken better care.

Hope this helps somebody. Elegiamore

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(((((Ellie)))))

Thank you for sharing. I am incredibly SORRY for all you are going through. You are very kind to try to help others here in the midst of your struggles. I am appalled at how little help and answers YOU seem to have gotten at major medical institutions. I'm not happy about Jennifer's treatment either :-(

I wonder about possible blood stickiness or thickening being behind your cyclical hypertension/heart attacks, etc. The fact that IV's seem to normalize things tells me that thinning out your blood is vital for your health... Also, the fact that you are getting shingles FIVE times a year tells me that that a herpes virus is running rampant in your body. That inflammation from viral activity can cause the inflammation (chronic DIC) that leads to hypercoaguable blood. Wonder if you are strong enough to try anti-virals or ampligen to work on the virus(es)?

I just found out that I have disatolic dysfunction (with NO risk factors)- no staging yet & am facing a work-up for pulmonary arterial hypertension. Like you, I've had to FIGHT to get these Dxes. The majority of doctors seem to pooh-pooh my concerns and/or chalk them up to POTS. Very frustrating... I, too, suspect that years of unmanaged/uncontrolled tachy has caused this damage. No one seems to get the big picture.

Your story is compelling and heart-breaking. We need your honesty here. Please know that you are in my thoughts and prayers.

Healing Hugs-

Julie

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