Do We Get Old?

[Kate2011]

Interesting question, but it may not be completely accurate just because I don't know too many people in their 70s who participate in forums... I'll be interested to see how it goes.

[Tzipora]

My other severe illness is gastroparesis, so probably directly related to POTS. In fact I'm not sure which came first. I've had a sinus tachycardia diagnosis for several years and have only for sure had Gastroparesis for a little over a year. but then my major POTS symptoms didn't show up until my nutrition got really bad about 9 months ago (and I only just now got the diagnosis of POTS).

I feel like the POTS stuff is more directly debilitating but on the other hand it's my Gastroparesis that is truly severe. I almost died this summer, literally, from malnutrition. And that was at least the second time I almost died from malnutrition/ GI issues in the past year and a half. I'm also currently dependent on TPN (IV nutrition) which puts me at a lot of risk for life threatening infections or in the long term possibly liver failure. So the Gastroparesis and POTS are almost certainly related but I feel like the Gastroparesis is probably shortening my life more than anything. And oh, I'm only 21. So basically I don't know what the future holds. I honestly feel truly blessed just to be alive. But I'll also say that even before the POTS diagnosis I've pretty much been thinking that I don't expect to live as long as I would without the issues I have. I'm not sure how long that is. For that matter on my mother's side of the family there seems to be a longevity gene or something. My great grandmother lived to be 103. My grandmother is doing great at 90 right now. My mom is going to be 68. So who knows. I may have that in my favor. Especially because all of those women have had some fairly serious health issues of various kinds (none of them GI and too my knowledge, none of them neurological either though...) So it's hard to say. I've kind of come to a dead end with Gastroparesis treatments at this point, though maybe treating my POTS could help some... All I know though is that I am focused on making the most of my life while I can.

[chipper]

My autonomic condition has been very severe, beginning about 30 years ago, and it has been a battle of variable intensity since. However, basic health is very good. My recent blood work was good. I noticed that only 2 people over 60 has taken the poll. As far as living a very long life goes, I hope that my age (63) will encourage you. Meniere's is another illness that I have that is caused by dysautonomia. EDS III is the cause. My grandmother lived to be 93 and she had EDS. Just like many, I look younger.

[POTSMama]

...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?....

...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.....

Julie, I'm sorry to hear you're having some unexpected health issues, but I'm 53 in April and many of my friends are in the same age range and I'm seeing all of us having a variety of medical issues (including cardiac issues) now, even those who don't have POTS/MCAS/connective tissue issues like you and I. (I've had POTS symptoms for more than 20 years and now this year major MCAS symptoms hit, for those who haven't been following my story). My husband, who just turned 52 (and has been a type 1 insulin-dependent diabetic for over 20 years), complains that getting old is really the pits and then he jokes he just isn't going to do it anymore.

That is not to say that we with POTS and related illnesses don't have to work harder to stay healthy and be more careful , plus realize we are at higher risk for problems, but I think we need to assume that we can live old too - - my mom died last year at 88 and her sister died last year at 86 and I'm convinced looking back that they both had POTS and my mother probably also had MCAS - - I wish I'd known when she was alive what I know now, because she was on all the wrong meds and wrong treatments and I think she might have lived longer and been more vital if she had had a POTS/MCAS expert working with her instead of just a senior's doctor who put her on an insane number of medications with adverse side effects I tried to get her off some of the meds, but her generation just did what the docs told them to and never questioned it). I feel very sad that I couldn't make her last few years better, but I was at least able to be around and help her and love her.

But I don't worry as much about living old as I do about living with good mental function when I'm older... both my mom and her sister showed some dementia and significant memory loss problems in their late 70s and early 80s. I am hoping that because I now know what is going on with my health, while they didn't, that I can get the proper treatment and not end up as bad off. I just want to be reasonably mentally fit, whether I live old or not. And as an OLD Mom (I have 9, 11, and 12 year old kids - - the 9 and 12 year olds were adopted but yes, I was pregnant at 40 and gave birth to a baby at 41 [my one and only pregnancy]), I'm going to fight like blazes to be around and "with it" to see my kids grow up and have families of their own.

Of course it's easy to worry (I do worry despite my bravado above), but none of us have a crystal ball and so I think we just have to do our best to get healthy, stay healthy, and not give up!

[POTSMama]

[....My husband, who just turned 52 (and has been a type 1 insulin-dependent diabetic for over 20 years), complains that getting old is really the pits and then he jokes he just isn't going to do it anymore....

Yeah, hmmm, OK, that didn't come out right! I mean he says he is just going to be ageless from now on, NOT that he doesn't want to be around! We both started saying we were "49 and counting" a few years ago....

[POTSMama]

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

Sandy, have you been evaluated for mast cell activation disorder/syndrome? Because BP dropping out and weight loss can be symptoms. Of course they can be of a lot of other things too, but just thought I'd throw that out there.... I hope you feel better soon!

[POTSMama]

OK, I have had POTS since I was 20 years old and am 55 years old....

....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....

Elegiamore, You are in my thoughts and prayers that you find some relief soon!

[blueskies]

Elegiamore, I'm thinking of you. You've had a very tough time. I do feel for you.

[TCP]

Yes this scares me, too. The meds I am on could well lead to dementia, which isn't too good. I have long-term ME/CFS, developed the worst Autonomic Neuropathy with extensive nerve damage all over my body. The Tachycardia and BP problems cause most stress, but the latest test show all is well. My plan is losing more weight, despite a healthy eating plan, the meds won't let me shed any more pounds at present, which is annoying and staying calm 99.9% of the time. I think that is key and living in the moment.

[TCP]

Elegiamore, I'm sorry to hear of your problems. I also had ME/CFS after glandular fever in 1984, but I am only just starting to suffer from the tachycardia/BP problems at the age of 46-51. I'm doing all that I can to assist the nerves and staying calm and looking after myself. I don't expect to make old bones, but I may be pleasantly surprised. You have been through such a lot, that I hope you can find some respite from all of this hun. I think you deserve it.

[ramakentesh]

• are there other illnesses like this that are not progressive, don't kill you, but make you absoultely miserable every day for the rest of your life? Bizarre

Yes. Myasthenia Gravis although it does progress in some.

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[jenglynn]

My biggest concern is not so much whether I will grow old or not because who knows??? Seems like diagnosis list is a mile long and no one can figure out how to treat me so I just don't think about it too much.

I really worry about my brain function. I've had a total of 10 concussions in my lifetime. I'm 38. Of the 10, 5 were "severe" with head trauma. 7 of the last 10 occurred in the last year. At this point, who knows how many I have had, I still have syncope daily and I don't always know if I've hit my head. So I know of 10 for certain. That is my biggest concern. I already showed some cognitive dysfunction on a test I took last month compared to one from 3 years ago. More worrisome to me- is that I can tell. It is harder for me to do things. My memory is so much worse. My retention of written and verbal words has diminished by more than 40%. I'm a grad school student and had to take this semester off. Somehow, I completed last semester even though I was hospitalized for 75% of it. I had 3 of those concussions in November and I've been I much worse since then. It is my goal to finish and I plan to go back in the fall. I'm 3/4 done- I can't just give up- but in Jan. I could hardly read two sentences without forgetting and I knew in the long run a break for my brain made sense.

I already feel as if I'm such a burden to my family, but at least I'm still me for the most part. I guess worrying about it does very little good but my main concern at this point is preventing syncope and head trauma. My husband is an only child- his dad died when my husband was 13 (of a head trauma which just adds to his anxiety- I feel as if his stress level is just off the charts) It has been just him and his mother for all of these years and they have been so close. 2 months ago SHE was diagnosed with dementia. As if he isn't facing enough right now The thought of him having to go through that with me just breaks my heart.

That's my story and my biggest concern. I just don't know that the research is really there yet to predict outcomes in situations like mine-

Jen

[ramakentesh]

I wonder does POTs improve with age or get worse?

[jangle]

Jenglynn have you asked your doctor about fish oil supplements? Massive amounts of fish oil have been shown in studies to sustain brain function after concussions.

[TCP]

I'm 52 and have lots of problems, too. I try not to think about the future too much and live in the moment. I think we have enough to worry about. I plan to be around for quite a few more years to come!

[POTLUCK]

Jen-many of the supplements are helpful for free radicals in the brain. Jangle mentioned fish oil. You might talk to your doctors ( particularly neurologist ) about N-acetyl cysteine, Carnitine, Ubiquinol, Vitamin C, I believe Melatonin, and other supplements that may help with reduction of Reactive Oxygen Species (ROS.) These are often increased as the result of prior trauma to the brain and by reducing ROS, one may improve function. There are many papers on this area in recent years ( literature search last 2 years brain trauma and ROS for example ) I have been reading alot in the area due to my own epilepsy which increases ROS and then is exacerbated in turn by ROS. Also ROS affect Nitric Oxide formation. Would be worth asking doc?

My thoughts on the poll, looking on the brighter side is that I think it only shows the demographics of the people on Dinet forum and replying to the poll. There may be many 80 year olds out there with POTS, not reading Dinet, as they are not searching as hard as many people on here are for a cure so they can move on with their lives. Also there are different etiologies and different aspects of POTS that affect lifespan, so one persons lifespan may not be affected at all yet there POTS may be incapacitating, while another person may have a more life threatening illness but less morbidity. I was just noting on another thread that allowing my HTN to go untreated likely affects my mortality risk yet this is a minor worry. The fact that the Mito doc has diagnosed me with an illness that is normally progressive and deteriorating is not good for my expected lifespan, but I think this specialty is in its infancy so am not sellin the house, so to speak yet.

When I told the Cardiologist POTS expert that things were at a 1/10 9 months ago he said it was a progressive illness and I was just doing worse. With the help of Dinet and the information such as the article Jangle posted from Vanderbilt on exercise in military cadets and some trial and error I am now doing far, far better. So much for the progressive part.

[RichGotsPots]

This is a good question, i wish the clinics documented average age, average life span, ect and followed up long term..

[Batik]

In the one study done on deaths with ME/CFS, average age of death was 55. And a lot of us here have ME/CFS.

[Joann]

I am not going to concentrate on worrying about a short life span. I am going to search for cause and cure or at least management of this! We are all so different.

I know the question is do we get old but I refuse to think I have a small amount of time left.

[lynnie22]

I find all of your responses very interesting. Well I think I'm the senior in this group of emails -- I'm 64 -- and I've had POTS that I know of for about 2 and a half years. I'm really not sure what caused it, I had my thyroid removed for cancer about six years ago and I think that was the beginning of a decline. I certainly don't feel really great since I've had it, although there are good days and bad days. I don't know how it affects longevity, but I do agree with some of you that you need to keep yourself in the best shape possible. Exercise and good nutrition seem paramount, but exercise can be hard, I know for me because I'm so tired and out of shape from not exercising in the past. Still, I know these are important to keeping our systems functioning at their best. I have other illnesses, someone mentioned diastolic dysfunction which I've had for years and was told that it wasn't something to worry about, whether the cardiologist was right nor not. I've had thyroid cancer as mentioned, have serious osteoporosis, had CFS for a few years, which may or may not be a part of what I have now. Still I believe what is most important is keeping yourself as healthy as possible, given the givens.

[AussieOI]

_{Rightly or wrongly I tend not to think too much about getting old!}

_{My primary concern is how can I improve my quality of life now and in the next few years and I would like to try to get to a point when I am largely asymptomatic from day to day.}

_{I think it is an interesting topic though.}

[Alison]

Sorry to hear about your concussions Jen. I can identify with not wanting your husband to worry. I also feel that way.

[TCP]

I have read that the biggest risk with POTS is respiratory or heart failure. I worry sometimes about the prospect of this and that is why like many people on this forum I am doing all I can to live as healthily as I can and this means dietary changes and supplementation, some regular movement/light exercise and meditation/relaxation. I am also using a neurostim to help with nerve healing.

[blueskies]

I'm 58 and one of my fears is that I do get so old and I find I can't manage my symptoms anymore. For example: the need to shower (in cool showers )often to cool my burning sore skin caused by erythromelalgia. Also, the difficulty I have with keeping my bowels moving and having some carer who thinks they can just give me any old laxative to get the job done (I react to so many of the usual laxatives). And how am I going to afford my meds? ETC. I try not to think about it too much but this stuff does enter my mind at times.

blue

[gjensen]

I figure that it will be what it is going to be, and it is not up to me. I will try to worry about the things I can control. I am human. I wonder. Then I set it aside.

My youngest son graduates in five years. I want to see them moving on to the next step. Being their own men, and able to back their mother up. That is all I ask for.

By the way. I am 40. I could have picked 30-40, or 40-50. 30-40 looked better, LOL.