bjt22

Hmm? Am I "older"? Maybe I'm kidding myself if I even have to ask.

I'm in my middle forties, but I've been dealing with this since my early thirties. Well, I've been dealing with it being BAD since my early thirties. I've probably had a milder dysfunction my entire life.

As someone who's dealt with this for many, many years, I do notice this.

I've felt for awhile as if we are just sort of put out to pasture. Not surprising in the society we live in. I think this is also influenced by the earlier literature that was put out that did describe this as a problem of "young women" and that these young women tended to "outgrow it". I think there might be some confusion and difficulty in explaining all of us, um, not so young women.

I will admit to feeling some middle-aged angst. Personally, I feel that there sometimes is the underlying bias going on that younger people should have some kind of RIGHT to feel better....and as someone who really had this start up full force while my own children were very young, I can understand this. Younger people have a lot on their plates and something so disabling is a horrible cross to bear at that stage in life. But come on....even though I'm through that stage, it doesn't mean that I still don't want to FEEL better. And no, what's happened to me isn't just something that I want to accept as "aging". I don't expect to feel like a 20 year old, but on the other hand, I shouldn't have to accept feeling like a 95 year old, either.

I do think there is some reluctance on the part of the medical community to really delve into this because they JUST DON'T KNOW what having this means as we age. They aren't comfortable talking about unknowns. Couple that with earlier reassurances that this wasn't something that should be life threatening or have any effect on any other disease process and, well, there you have it. Maybe they just don't really KNOW what to say to us.

I can have difficulties with sitting for longer periods of time as well. I've found compression garments to be fairly helpful for this. Nothing elaborate, but a one piece lycra undergarment can be quite comfortable and it does offer some help in keeping at least SOME of my blood in my upper body. Ofcourse, sometimes I still have other symptoms, but it can make it more bearable.

Clonidine/side effects: for what it's worth, I pay a good price out of pocket to use Catapres patches. Many people report far fewer side effects. I know this isn't an option for everyone. My insurance does pick up a small portion of the cost, but paying the higher price is worth it to me in the long run.

Often, its not just the question of either/or...but ALL OF THE ABOVE. Taken alone, just a beta blocker probably wouldn't help so much. However, taken with other drugs, including Catapres and Mestinon, I do get a little relief.

Side effects? Ofcourse there are side effects. Sometimes we have to be patient and often side effects do diminish with time. Also, all beta blockers are different. I tried one, and that was why it took me literally years to consider another. It was HORRIBLE. Another? Not so bad, and actually helpful.

I can only speak for myself, but your wife's symptoms sound a lot like mine. Blood pressure and heart rate all over the place. I have to have a beta blocker. I resisted for a long time. Yes, the beta blocker along with Catapres often makes my blood pressure lower than what it would normally go...but, it counteracts some of the huge swings in both blood pressure and heart rate. That definitely makes me feel better. Not cured...not able to do a lot of things, but there's nothing wrong with feeling better just to, well, fell better.

I don't know how to respond, exactly. I think the over all feeling-like-something-the-cat-drug-in. When I try to explain with what that means, it comes down to weakness, fatigue, always-on-the-edge-of-feeling-worse.

When I'm in cluster headache cycle, definitely the headaches. I'd rather faint 15 times a day then endure those monstrosities.

Acceptance is not a one time thing. The term "acceptance" is often used as a sound byte to describe a step in some kind of program or process. We have to "accept" over and over on a regular basis. I've been sick for a long time, too, but I'm constantly having to go through this process again. You know that definition of insanity? Doing the same thing over and over again yet expecting a different result? Well, I'm often guilty of that kind of insanity. Somewhere in my mind, I often think "I'm just going to try to do this one more time" and I can really, really think that that time will be different. Ofcourse, it never is. And yup. I'm disappointed all over again.

I think this is NORMAL. In fact, I think those "step programs" and such do us a disservice. We are made to feel guilty because occasionally we do get angry or resentful. We're supposed to have achieved that much talked about acceptance. Well, when you're angry again, all over, for the 45th time, you are left feeling that you are a failure at this "acceptance" thing, too. You're not. It's not a one time thing....its something we just have to work towards all the time. And while doing so, we really, really must be gentle with ourselves and offer ourselves the kind of compassion we frequently extend to others.

I understand what you're talking about. My husband says he can always tell when I'm doing really badly because he'll come home and I'll have the television going as loud as it can go. It isn't that I can't hear, it's that trying to listen just isn't working, if that makes sense. For whatever reason, if I can't really keep up with what they're saying, I think it will be easier if I just turn it up louder.

I've done some really goofy things. I've gone up to the checkout counter and forgotten how to pay for things. I was at a store with my husband, didn't feel well, and decided to go to the car. I got lost, and this very elderly lady pulled over and asked me if she could help. I forgot how to vote, and the ancient poll worker had to come and help me. Just the other day, I was trying to tell one of my sons something about my other son. I could not remember his name. I finally just said "You know! That OTHER brother you have!". When I was at my worst a few years ago, with a whole lot of things really going on with all of this stuff, I spent a year not being allowed to cook. I'd sit right there in the kitchen and watch something burn yet couldn't get it together enough to turn the stove off. I still can't leave the kitchen while I'm cooking.

I do see what you're saying.

I think there are many factors that are at play. For years, I was frustrated over similar questions until it dawned on me that NO ONE REALLY KNEW what happened to people like us in the long term. POTS has only been considered an entity to itself for a little over a decade. Five years ago, or eight years ago or even two years ago, it was impossible to state with certainty any kind of projected outcome. I think this really applies to those of us who are hitting our middle years. There have been a few studies that indicate that young people who develop POTS have a good prognosis. These, I believe, are often those who are diagnosed in adolescence or in their early twenties. Sometimes they are those who never had symptoms before and experienced a very sudden onset. I think many doctors have read these studies and try to apply this the conclusion to populations that don't fit into that demographic. Many of these might not even realize that we could be dealing with entirely different entities. Furthermore, there has not been adequate time to see what happens to these young people as they become older.

I also think that since more cardiologists are becoming aware of this, there are more people being diagnosed with this earlier in the course of the disease. If a doctor diagnoses a person early, well, they've seen them while they are still able to work and function in most situations. Many of us were not diagnosed until symptoms were severe. We've already progressed. Our expectations are certainly different than those who have milder symptoms earlier in their disease. We can't just lump all of these cases together. It would be like lumping all those who receive a breast cancer diagnosis together. We certainly would expect a different outcome for someone who had a suspicious lump identified through mamogram and removed than we would expect from someone who's already had one such lesion in one breast and then discovered another in the other breast two years later.

Not able to work. In fact, several years ago I had to give up most activities I was involved with. It was the only way I could manage to feel even a quarter human. If I had not had the wonderful husband that I have, I would not have been able to care for my children.

I have this problem, too. And its been going on for YEARS.

I'm normally a very private person. I'm not someone who ordinarily volunteers much of anything to anyone. I have to admit that I'm also biased against those I view as chronic complainers/crybabies. Part of me just isn't going to be that way. Couldn't go in a cry in a doctors' office if I tried. I don't show "distress" easily...this has gone on since I was a child. My mother never knew I was sick until I was almost dead. I delivered two of my own babies. So, part of it is that it's just a facet of my personality.

At this point, I've also been dealing with this stuff for a LONG time. Yes, I've been worse. I tend to discount a lot of really crappy stuff that's happening to me because I know that it's not as bad as it can be. I'm just used to feeling bad. I've accepted some things, so I rarely talk about them. They're just a part of my existence. Had this happen at a doctor's visit just a few weeks ago. Had just gotten back from a short trip, and as usual, I was swollen 15 pounds past my normal weight and my lungs were pretty gunky with fluid. That happens. I do mention that it happens, and then this-or-that doctor is shocked when lo and behold, they discover it for themselves. Then there's the disbelief, and I'll admit, I can be a bit cranky because I'm verging on being in "I TOLD YOU SO" mode. I think I just can't manage to look/appear sick enough.

Now, while I've accepted that I'm like this, and while I'm accepting that I'm not really going to see a lot of improvement in my condition, it would be nice to feel every now and then as if there was more understanding that my quality of life is pretty low. I accept that it's my responsibility to share this with health care providers, and I try...I really do try....but whatever it is I'm doing is not getting across. Ofcourse, it could just be that there really is little more that can be done. I understand that, and I accept that, too....but you know, part of me would like to just hear providers come out and say this once in awhile. I know that can't be enjoyable for them. I wouldn't like doing it either...but a little intellectual honesty would go a long way. Who knows? If that happened, I might even be better able to more honestly discuss what my life is really like.

A little late to the game, but interesting train of thought, nonetheless.

I've always had some symptoms. I'm sure that I'm one of those who was literally born with some irregularities. They became more noticeable during my next-to-last pregnancy. I had bronchitis when I was about 16 weeks, and it took forever to shake. After it started to recede, I developed migraine/cluster headaches. No one paid much attention to this, as I was pregnant and it was assumed to be just a pregnancy related thing. However, I noticed that these headaches were set off by changes in blood pressure. They occurred at rest...when my blood pressure dropped and was at it's lowest. They also kept up for awhile after the pregnancy. Nearly a year, if I remember correctly.

They did resolve, and a little later, I became pregnant again. No headaches or unusual symptoms at first, but further along into the pregnancy, it was noted that my blood pressure was extremely labile and I had what was termed "pregnancy induced tachycardia". I felt all right, though, until about a month before I delivered. Everyone in my family, including me, caught some kind of weird flu virus. It was really going around at the time and was considered quite a mystery. It wasn't the "flu" of the season...but it was quite nasty. From the time I had this, I was never quite right again. Within two days of delivery, I passed out. These incidences increased and I kept feeling worse until I was bedridden by about six weeks post-partum.

Luckily, I was very quickly diagnosed. After awhile, I was successfully treated. I did quite well for about three years. At that point, symptoms were again increasing. I caught a cold, and literally, almost overnight, it was all full blown again. That was nearly 10 years ago.

So, yes....there were "stresses" on my body that brought this out into it's full blown state. I think it was a combination of stresses and I still believe there might be some kind of immune system thing going on with it.

I do not like sunlight. I do not like even having it come in my windows. I'm sensitive to the brightness, I'm sensitive to the heat, and I don't know how to explain it, but I just don't like the way it makes me feel. I feel it in my brain, much as I do flourescent lights.

I think it's possible that my pupils don't constrict properly and that could be part of the problem. I know I'm very sensitive to heat, and that's probably another factor. However, the "feeling it in my brain" part I really can't explain.

I've been using Mestinon for a little over a year now. I had some similar problems when starting it....particularly the muscle aches/pains. As mentioned above, I think it does cause the muscles to be more contractile, so no doubt that can increase fatigue. I didn't notice being more tired, but for a couple of weeks, my muscles were downright sore. It was worth it, though...after awhile, I found that I had much less muscle weakness than I did prior to taking the drug. My arms and legs did not shake ALL the time. It's also helped with my digestion....it gave my system a much needed speeding up.

For whatever reason, one of the main problems I've had with this drug seems to be it's making my blood sugars go a little whacky. I've always been prone to hypoglycemia. I'm insulin resistant, and either "pre-diabetic" or "well-controlled diabetic", depending upon the way you look at it. When my blood pressures are really out of whack, so are my blood sugars, and when my blood sugar drops, my blood pressure will as well. Sometimes it's difficult to tell which comes first in a very chicken-or-the-egg type of way. Anyway, mestinon does seem to make my blood sugar take quick drops as it's leaving my system. I have to make sure to eat the moment I start feeling this or all **** breaks loose. I've timed my dosages, and that seems to help. It's a bit of a hassle, but for me, the benefits seem to outweigh the trouble.

Had mine done last year. I was in the "profoundly deficient range"...less than a five. I took the 50,000 IU's with no problem. I've not been back to have mine checked, but I probably should.

I take labetalol. This, along with Catapres, has brought my heart rate down considerably. Without either, my sitting, resting rate was 100-120 bpm while standing would cause it to soar to 140-180 bpm. With the drugs, my resting rate usually stays in the 75-80 bpm range while standing rates are usually in the 100-110 range. I still have that 30+ jump in rates...but 110 standing can feel a heckuva lot better than 180 bpm.

I had a stress test about three years ago. I am very orthostatic, therefore, in the preliminary exams I lost a readable blood pressure upon standing up. Nevertheless, I was determined to attempt the test since I was there. Ofcourse, every reading on the treadmill was a "non-reading" as my blood pressure could not be measured. For that reason, it was determined that I "failed" the test. It was also considered "equivical" since I only lasted four minutes. I had readings during the test that showed a slight variation that was questionable as well. My family doctor recommended further testing due to other factors, however, my autonomic specialist was not alarmed by my decision to forgo further testing.

I must say, however, that at this point I wish I had gone for the further testing. It would have been nice to have ruled out cardiovascular disease. However, the test, in and of itself, was worthwhile because I can point to it as evidence of my disability. Few people, including medical professionals, fully understand tilt table testing. They are, however, familiar with "stress testing". When I say that I lost my blood pressure as soon as I stepped on the treadmill, well, for whatever reason, this is something that they understand.

This is something I've wondered about. I have pretty extreme muscle weakness, and my eyes have never moved properly....not since I was a child. I also have some trouble with swallowing and chewing. I wouldn't have given it much thought had I not started mestinon and noticed an improvement in muscle strength on even a relatively small dose.

Thanks.

Its a touchy topic. I can't work, either. In fact, I can't manage my family and my household without help. For better or worse, we live in a society that values stoicism to an inordinate degree. Don't get me wrong...I'm often as guilty as the next person in that regard, and in the back of my mind, I often have those "but if I just tried HARDER" thoughts lurking about.

Well, is this drug helping with the night time chest pain? That would be the question. If it seems to help, then are the side effects worth the relief from the chest pain? Side effects often lessen over time. While you might feel a bit loopy at this point, in a few weeks, this might well improve.

If the drug doesn't work, then what's the point?

I still have chest pain, but mine is lessened by a beta blocker and catapres. Looking back, I did have side effects to the beta blocker for awhile, but they did diminish over time. I still have bouts of the chest pain you describe, but they aren't nightly occurrences.

I do this all the time. It's sooooo frustrating. I always have plans for the day in my mind when I wake up, i.e., do dishes, do some laundry, run some errands, take care of kid, dogs, make meals, etc. THEN I stand up and usually I do well for the first 10 minutes and after that (as my hr has been cruising along) I'm completely weak and too sick to even function, so I have to lay back down and realize that I'm not going to get more than maybe one thing done, which is of course, take care of my daughter's needs as I'm able. Some days I can slowly get a load or two of laundry done and the dishes, but this takes me all day with lots and lots of breaks throughout. I'm so amazed that some of us are able to hold jobs, so there are so many levels of severity of this illness.

You explained it so well. I have a couple of things a day that I feel are "musts"...I must get up each morning with my youngest two kids who are still in school. I don't have to do much...they're teenagers, but I need to be up with them. I also like to be able to at least supervise getting dinner around...many times very simple dinners that I can do with minimal help. And then, maybe a load of laundry. That's pretty much what I can accomplish in a day. If I do anything else, then one or more of these tasks has to give.

If I have a couple of days in a row in which I push...say I go out to a store or an appointment or even to someone's house....I can be down for several days following. Heck, if my kids all converge on a weekend and bring boyfriends, girlfriends, significant others, etc., for an evening's visit, I can be almost totally non-functional on Monday and Tuesday.

I am the worst at this. Laying flat on my back in bed, I can often imagine that I can do all sorts of things. Sounds easy until I get up.

I think for me this is a kind of a denial that I'm still in even though its been 13 years since I had a diagnosis. Part of me really does want to think that I can do more than what I can really do.

Wow....guess this doesn't apply to me as when tested, my levels were barely detectable. As far as I'm concerned, I'd rather keep my intake of vitamin D up as much as possible....can't think of a worse combination than having brittle bones and a tendency to faint or fall over.

Well. Suppose it's theoretically possible, although I don't know what "temporary POTS" is, either...maybe its just semantics, but its not POTS if it's caused by drinking a highly caffeinated drink.

I've never had Red Bull in my life. However, back when I first started having serious symptoms, my first reaction while waiting for a diagnosis was to make an effort at "healthy living". Cut back on salt and cut out all caffeine. I became much sicker at an alarming speed.