For Ages 40 And Up-- What's Your Take, For You Is Pots Progressive?

[Kellysavedbygrace]

Most of the literature out there on Dysautonomia (POTS/ NMS) reports with sample sizes that are small and average ages being much younger than me. I've had some doctors tell me that since I have POTS it is likely to improve over time or eventually go away. According to some studies there is significant evidence of this in the younger ages (15-25) but there is little in the literature supporting this in the more mature population. One autonomic dysfunction center even says in its patient literature that in some cases, older patients report a decline in health.

My mom and I were discussing my progress (or lack therof) last night and we both think my condition is slowly getting worse. Some new symptoms, or symptoms getting progressively more pronounced such as what used to be licorice legs has, at times, turned into me not being able to put weight on my feet (on a couple of bad days the past week). And what used to be a shortness of breath is now often combined with an inability to speak in full sentences- just a few words eek out. Yet, all along I've been told/read that this condition (Dysautonomia- POTS & NMS) is not progressive or degenerative.

For those of you over the age of 40 I'd love to learn about your thoughts/ wisdom on this topic.

[arizona girl]

Hi Kelly, I think with the symptoms your having, the better question is what is causing your dysautonomia. The truth is improvement comes based on finding and treating underlying cause. The weakness your describing sound more like a neuromuscular disease.

I'm now 55 and I was progressively getting worse though I first was diagnosed over 25 years ago with a unclear rheumatic disease and then an incorrect diagnosis of fibromylagia. Only in the last few years did my true diagnosises present finally with the proper testing. We're treating and there have been improvements and then setbacks.

What types of doctors and testing have you seen and had done?

[Chaos]

I've been told by my POTS neuro (at a major well known center) that "it would be optimistic to think it will improve" in someone my age. I have autonomic neuropathy and EDS so his thinking is that since nerves don't regenerate as well in our age group that it's unlikely things will improve significantly. He has commented several times that "if you were 18, I'd be very optimistic that it would improve with time", but he doesn't seem to hold out the same hope for me. I'm not giving up on looking for things that will make it improve though.

I'm not able to work now so I've definitely gotten worse over time. On my "good days" I think I'm maybe getting a little better, but when I crash again, I'm as bad as when I first got really sick 3 years ago. To some degree, I realize I've just learned to compensate and deal with it better. At least knowing what it is, it's not so scary as when I was first sick.

[MomtoGiuliana]

I was first diagnosed at age 34, 10 yrs ago. I don't know if you are asking this of people who didn't develop symptoms until age 40 or over. But my symptoms have gradually improved over the past 10 yrs.

[gackedo]

I am currently 55 and was initially diagnosed with Inappropriate Sinus Tach 10 years ago. Five years ago as my symptoms got worse I was rediagnosed with POTS. I have gotten better but I believe it is just because I am now being appropriated treated with meds that work for me. I have also been very persistent about participating in an exerecise program-no matter how hard it can be. It's a constant battle and I feel that without meds my symptoms would reappear and I would be really disabled.

[futurehope]

I agree with Arizona Girl in that finding an underlying cause for POTS will help you determine your final outcome.

As for "better or worse", as far as I'm concerned I've become progressively worse from 2 years old, through the teen years and now at 61 years old. I've never understood where the doctors say the young ones will get better.

My conjecture on my issues is that the malfunctioning displayed itself at an early age. It showed itself more frequently the older I got, until I became too disabled to work or live my life the way I used to.

I have mast cell activation disorder. The disorder is caused by a genetic mutation. How can you fix that? The older I became, the more frequently and severely my disorder was displayed. I don't know why doctors make blanket statements about the younger ones getting better. I started out young with a defect that manifested itself more frequently and severely the older I became. What do the doctors know? Half the time they do not even understand POTS.

My MCAS (Mast Cell Activation Syndrome) doctor told me that the way I displayed some symptoms at a younger age, and then noticed more and more symptoms as I aged is typical for my disorder.

That being said, once you have identified what it is that is contributing to your particular case of POTS, the better chance you have of finding help for yourself.

Oh, and BTW, us older folks are in a deteriorating condition naturally. Even the healthy older folks begin to deteriorate. It doesn't take a rocket scientist (or a doctor) to figure out that older folks tend not to get any better or any younger.

[Gerrik1]

I am 51 and was Dx 8 years ago. I go through good spells and BAD spells. But all in all I would say I have gotten worse slowly at a slight decline over the years. When I was first Dx and put on meds for my POTS things really improved but each year I have more bad days than good ones.

[HopeSprings]

My illness started in my 20's, took a dramatic turn for the worse in my 30's and has gotten slowly progressively worse since then. I will be 40 this year. (it's a rough birthday). I know exactly what you're talking about with the legs and I use this as a gauge too. There was no leg thing (arms too) until the last few years - it's new. I'm just waiting to see what happens with this. I don't think they know whether it is or can be progressive/degenerative? I haven't heard of too many (any?) cases where people progessed to the point of incapacitation. They need to do a large, long term study on this.

[targs66]

Futurehope makes a good point - that we are deteriorating naturally with age (depressing but true!). My personal feeling (just an opinion) is that while I have become much worse over time, the natural effects of aging have contributed to my general incapacity. In addition, I think that those natural aging effects (that everyone goes through) have been greatly exacerbated by this illness. In other words, but for the effects of aging, maybe my body could cope better and adjust to dysautonomia (as a young person's body might do), and but for the effects of dysautonomia, I suspect I wouldn't feel so susceptible to and affected by old age issues (like menopause, which is bringing on all sorts of problems for me). I hope this makes sense!

[pat57]

I was at my worst during perimenopause because of lower blood volume. I got much better when

periods stopped.

[StephL]

I'm 40 and getting worse.

I'm fairly convinced that there is something genetically wrong with me and that causes dysautonomia.

My grandma use to faint all the time when she was young but as she aged, that has stopped. My daughter has had at least 2 faints that I know of, with several near syncopes. She just recognizes the symptoms now and sits down right away. My uncle was playing the sax one time and had half of his body completely lock up on him. He managed to call 911 but after a battery of tests they said it was idiopathic and sent him home. All of us are having other strange symptoms.

My point is that even though the fainting stopped for grandma, the rest of the problems are getting worse for all of us. Maybe not my daughter so much but she is 20 and refuses to recognize that she may have this condition as well, she won't tell me when she isn't feeling good most of the time. So, my grandma is in her 70s, my uncle is in his 50s, and as I said I'm 40, all of us seem to be deteriorating.

[HopeSprings]

Targs- makes perfect sense and I agree.

[targs66]

Thx, Naomi. I also agree with your point - that they need to do a long-term study on this. Maybe then they would have enough solid data to try to factor in the common effects of aging in order to determine whether this is a progressive sort of illness.

[corina]

I got diagnosed in my 30"s (had problems all my life) and got slowly worse over the years. Two years ago I found the med that works for me. I'm not healed but I am doing better and have a much better quality of life. My point is that although I'm older now I am doing better than before I started octreotide.

Hope you all will find the right for you med also!

[vemee]

I have had pots since I was in my teens. I was not diagnosed until my late 40's (I am 56 now) when my condition became disabling and I could no longer work. When I was younger I didn't even know how to take my pulse, but looking back I had all of the symptoms. The brain fog was the worst part. Also I would always do worse on hot days. Unfortunately, the careers I chose were not the best for my condition. I was a Marine officer and later a firefighter (I am a male). I was in good shape and reject the idea that deconditioning was the cause. The type of pots I have has to be genetic; my daughter has pots and several ancestors down one family line had pots like symptoms.

Had I been diagnosed earlier I don't think I would have been cured but I do think the treatment would have greatly improved my life. My daughter has responded very well to treatment. I on the other hand kept getting told that there was nothing physically wrong with me and that I was depressed. So I spent years going to a psychiatrist which did nothing to help my condition but in fact gave me new problems due to my sensitivity to medication.

Finally 8 years ago something new happened and I started to have neuropathy all over my body. I went from being a brain fogged firefighter who could meet the physical requirements of the job to someone who had to rest between ax swings, The final blow came during a fire when I was so weak and could not breathe that I could not even pull the hose into the burning area. I don't know what caused this change. It could be a natural progression or I could have gotten into some bad chemicals during a fire (this sounds cooler even though I can't prove it).

I had thought the autonomic neuropathy had run its course a couple of years ago. This summer I noticed that when the rest of me was sweating my legs were dry. Even though qsweat tests had told me that I was losing the ability to sweat I thought that it was only a minor loss. However, now it seems everything below my waist has stopped sweating or at least is not sweating as much. This could only be my perception but there is a difference.

I have had a hard time getting the doctors to look for the cause. They just want to treat the symptoms. I should be happy that they are now dealing with my condition. I have to go out of town to pots specialists since the local doctors don't know much about the condition and often consider it as simple tachycardia. When I am upright I have a 44% loss of circulating blood volume and high norepinephrine.

[Kellysavedbygrace]

Thanks all for your input on this. I agree that getting to the underlying cause is a key- I have suspected MCAS and am awaiting final lab results which I suspect will confirm this. I've started taking antihistamines and they do seem to help a bit.

A study on this for us older folk would be so helpful.

[E Soskis]

I'll be 52 in a couple of weeks and have to say that the AAG is progressive. My cardiologist explained to me that I function at a certain level - when I "crash", I never quite return to the level at which I was functioning before the "crash" - I return to a lower level of functioning - this will keep going until I eventually don't return to any sort of functional level. I have found his explanation to be true in my case. I am grateful for the plasmaphoresis treatments as I seem to be able to bounce-back better than before treatments. I definitely know I am not where I used to be - my heart is really failing me pretty fast -

It would be nice to see research studies devoted to dysautonomia, causes, treatments, etc...The study that keyed in the neurologist to my AAG was only comprised of 7 people - that was all the researchers could find!

[Kellysavedbygrace]

E, what test did they do to Dx this? I haven't heard too many others discuss this type and wonder if more of us aren't in this category.

[blueskies]

Hi,

In retrospect I've had signs of dysautonomia since puberty - the signs came and went and were more obvious during my three pregnancies. Ten years ago (nearing age 47)though I was an extremely fit, good weight, healthy woman with a few health problems and recurrent migraines, problems standing in one place for more than a few minutes (this has been a symptom since my teens that was often evident).

I equate the onslaught of stronger pots symptoms like a domino effect. First, unable to stand unaided, at all along with not being able to walk without assistance -- that lasted for a number of years. My migraines became more frequent and often more painful until they developed into chronic daily migraines despite trying every preventative migraine med known to medical science. I developed allergies (sometimes anaphylaxis, anaphylactiod reactions, sometimes rashes and hives), and chemical and food and many many med intolerances. My weight dropped alarmingly for a couple of years but then I started to put it on and am now very overweight. I also became completely constipated and for about 6 years I stopped sweating (sweating ability has returned with a vengeance but not complaining as it's better to sweat too much than not at all, in my experience). I am mildly better constipation wise (but anything can upset this tenuous state -- knock on wood and hope the gods aren't listening because as soon as i say somethings better it's odds on that I jinx myself). I can walk for exercise but have noticed that doing so is often a trigger for migraine so strong that can't be relieved with opiate medication (I take the sort with naloxone that is available in Australia -- the naloxone prevents the profound effect on the bowels). Yet walking for exercise is the one thing that means I can do a bit more - legs are stronger, for example. But not sure if the frequent 'more painful' migraine response is worth it. However there are times when I can't exercise at all -- had a period of 4 months just recently when exercise was impossible.

I was diagnosed about 6 years ago now. But although diagnosis has given me a label and helped some of my doctors to understand that I'm given to pretty weird responses to meds and treatments it hasn't really helped at all.

I'm now pre-diabetic due to a restricted diet which allows me to eat high fat dairy foods, a few different vegetables and one type of fruit-pears, and I have to eat white bread with no whole grains. I can eat fresh meat and white fish but it has to be very fresh -- all this because I'm highly sensitive to salicylates, amines and glutamates (preservatives and colourings too, even the 'natura ones') and have been this way for 9 years. (I made a mushroom risotto for my husband last night and was suddenly seized with an almost overpowering desire to eat a spoonful - but knowing I would probably bring on a rapid and bad reaction stopped me). What happens with the food is that somehow, much like allergies, my body recognizes the naturally occuring chemicals - salicylates, amines, and glutamates - as a sort of 'poison' (my way of explaining it) and if I indulge in them I will end up with my skin feeling (and often looking) like it's been badly sunburned. One of the docs I see explained how this happens -- the process -- but I really can't relate it to you. I wish I had never, ever, gone on the saliyclate, amine and glutamate restricted diet because I react more strongly and painfully now than I did before I went on the diet when I ate the problem foods -- I became more sensitive because I eliminated the foods from my diet. Apparently 'they' know 'now' that this can happen to a small percentage of people with this problem. And all I can say is that's a good example of doctors thinking they have the answer to a problem but they are actually looking before they are leaping? Or am I one of the small percentage of people that 'well it's a bummer it happened to you but it doesn't happen to most people.'

So many problems -- yet I know I'm not the worst off with this thing. That other people with pots are constantly bed bound. I appreciate that I'M NOT THAT bad but there are many days when I do little but lie on my counch because I feel dizzy, sick and migrainous and feel like I'm going to fall. But the major problem is that in the last 10 years I've aged about 30years. I should be 56 but feel 86. Health wise. And my mental health has taken a battering. Most of my life I've had dysthemia (low grade depression) interspersed with periods of deep depression. But I can't take the meds that would make me feel better because of side effects that are intolerable. Some I'm even allergic to. It's all an uphill battle as I get older.

And financially, it's been a disaster. Unable to work for a decade has made things very financially tight and my husband and I can no longer look forward to a financially secure old age. Although I live in Australia and we generally have cheaper health care the very good specialists still cost a lot of money to see and the govt. only pays out a small rebate in comparison to the fees they charge. And my medication costs a lot (although not as much as it costs people in the u.s. I believe).

When I read or see articles about the necessity of aging healthily - looking after our bodies -- I want to freaking scream. If only it were that simple. How lucky to be one of those women in their 50s who think this is the best time of their lives and that they realize the importance of maintaining a healthy life style. Little do they seem to realize how precarious such a gift of good health and the ability to maintain it actually is.

[GingerA]

I haven't reached 40 yet ( I'm 38) but I totally reject the notion that this condition will just disappear over time. Medical science does not know enough about us to make that statement. My personal opinion and experience is that this presents itself in peaks and valleys. At 16, I started having symptoms and got no answers other that docs telling my parents that I was depressed. (If you feel bad and no one listens it will make you depressed!) I had times when I thought I was better. Even for years, only to crash again. Now I realize that taking care of myself can help prepare my life for the coming crashes but they will always come. It is just part of who I am.

[Kellysavedbygrace]

Blue, I'm sorry to hear about your situation. We don't need financial challenges on top of these medical burdens. It is interesting you are mentioning eating a white diet- I'm trailing a non- fiber diet and along w antihistamines seems to help but you bringup a good point about our bodies becoming dependent.

Ginger, I think you've nailed it: peaks and valleys. I hope to get out of this valley soon.