sylvan

Sounds familiar to me! I constantly forget things, even in between saying I'll do them and walking down the stairs. If I really need to take something in to work with me, I need to make sure to put it where I'll trip over it, otherwise I'll leave it behind. But I've always been like this, so I don't know if it's assocaited with the dysautonomia. I remember as a kid getting in trouble all the time for doing things like agreeing to put the dog out, or scoop the cat's box, or clean my room or whatever, and by the time I got to the location I forgot what I was doing and wouldn't do it. I honestly wasn't skiving, I really did forget. If something happened like I accidently kicked the cat's box, I'd remember and do it. And other people have similar experiences. My boss from my last job actually left his *laptop* on top of his car and drove off. (And he was the driver -- left it on top, got in, and drove). The first time, the laptop miraculously survived. The second time, not so much.

That sounds sort of like my cardiologist -- he told me it was way over his head and only kept helping me because the neurologist and endocrinologist dismissed my symptoms as not in their area and he had a friend who was some sort of specialist that he could chat with (plus, he was a nice guy and not willing to let me go on with unexplained tachycardia). I suspect if my accidental fix had not occurred I would have ended up the patient of his friend. I don't know what sort of situation you're in, but it might be worth just making an appointment with the cardiologist -- with you in front of him, you'll be a lot harder to ignore or put off. He'll have to either perscribe those drugs he talked about or refer you on to someone else. I would think that he would be more networked with the appropriate specialists than your primary, if a new doc is needed.

In my composing my most recent post where I mentioned my tendancy to severe/rare reactions to medication, I was suddenly struck with a memory, and now wonder if my tachycardia (and other?) issues could trace themselves to a medication. I took it for only a week, but I've long been aware that it has had at least one life-long side effect. I don't remember what it was, but it was perscribed after I was diagnosed with IBS -- something about modifying the intestinal contractions. The effect I know it has had, is that it had the side effect of stopping you sweating, and warned not to overheat while taking it. Unfortunately, at the time my job involved heavy physical labour outside and it was summer. So despite being very careful I think I managed to give myself "artificial heat stroke" -- overheating and no sweating. As I said, I only took it for a week, but that summer I had several episodes of heat exhaustion (one getting close to true heat stroke) when I had never done so before. Since then, I've been very sensitive to heat and have to watch my activities carefully to avoid heat exhaustion. But the other thing I remembered is this: I always read those inserts that come with the pills, with all the side effect, etc. On the list of "rare but dangerous" side effects to "call the doctor immediately if" you have them was racing heart -- which I guess is tachycardia. I experienced racing heart shortly after taking the first pill, and dutifully called the doctor immediately. I was basically blown off, told I was imagining it, influenced by reading the slip. I don't remember why I stopped the pill -- I remember it didn't really help the pain any. But I do know that about that time is when I can remember the symptoms I now complain of starting. I wonder if it could have possibly caused all this?

I'm wondering if it's worth pursuing another medical saga in search of a diagnosis -- my full story is here: my story. The short form is: I had exercise-induced tachycardia which was fortuitously cured by medication for another issue shortly before I moved from the US to the UK. For the past 7 years I've been taking that medication and known only that I have "some sort of autonomic nervous system disorder", which is the best the cardiologist, who admitted he was out of his depth, could say. I recently heard the word "dysautonomia" and have been investigating, and it seems other issues that I had and some I still have might be related. I know part of my hestitation to pursue medical diagnosis is from horrible experiences with the US medical system (insurance company problems, inaccurate bills for thousands of dollars, collection agent harrasment, etc.), which I won't encounter here. But I also remember from my two major medical sagas (one which resulted in an IBS diagnosis, another the one right before I moved), that I tend to have severe and unusual reactions to whatever drugs/dyes/anethesia they might give me. I remember stabbing abdominal pains for a week after they injected me with something to image my gallbladder (apparently a known but very rare side effect...), and several other similar events. So I'm wary to scared of medical tests. To top that off, I'm terribly shy -- I don't like talking to strangers and hate drawing attention to myself. But what is talking to a doctor but a meeting with a stranger for the express purpose of drawing attention to myself? Given that the most debiliating issue, the tachycardia, has been cured by the meds -- and I was recently reminded what an amazing difference in quality of life that makes when I tried briefly stopping the meds for my pregnancy (back on now, that didn't work) -- I'm wondering if there is a point in getting a diagnosis. Would it help the remaining issues? I'm left with some CFS-like symptoms (fatigue, post-exertional malaise) and clumsiness. But I know from seeing my husband's struggle with CFS and having a friend whose career was cut short by CFS/FM (and reading things here) that I'm incredibly lucky in my symptoms' mildness and my ability to function. I hold down a reasonably demanding job and have enough coping strategies that I apparently put on quite a good "act". The one work friend in whom I've confided was honestly surprised to hear about my struggles. He said he always thought I was someone with tons of energy that could do lots. Sometimes I feel like I just can't keep working at the level I do, but so far I've always managed to pull through the tough bits. (It does make me wonder what others who appear to be sailing along might be hiding.) So I almost feel like I don't really qualify for trying to solve things, since I'm doing so well already. I've also found myself thinking, well, get through the pregnancy and then I'll see if I want to pursue this. But I wonder -- might that be a reason to pursue it now? Might knowing more provide useful information that could be important? I'm torn, and mostly terrified of seeing more doctors, and it's hard to seperate the fear from any reasoned justification.

Hey Dani, I feel for you! As I just recently got pregnant, I found it very odd how people kept asking me, "Are you tired?" And the answer had to be that yes, I was tired, but I honestly couldn't tell a difference from before! Now a couple months down the line I can tell that the pregnancy appears to have shifted things down the bottom of the energy cycle: "good" days are like "medium" from before, and I can have "bad" days that I'm a notch more tired than I remember being consistently. Another odd thing is how it's suddenly become "acceptable" to be tired/sick/etc. Just this week one of my bosses (the only one who knows as of yet) offered to spell me for part of a particularly arduous task coming up in a few weeks (we have two days of rapid-fire 15 min meetings from 8:30am-6pm with a short lunch break) if I thought I'd need it. My initial reaction was that why would I need help, as I've always done it before even though it's horribly exhuasting and I need to stash away snacks and put my head on my desk for most of the lunch break, and no one ever offered help before. Then I realised it was because I was pregnant, and I was expected to be tired! Oh. I'm wavering between enjoying this new-found soliticousness for at least as long as the pregnancy lasts, or going on as I always have before out of principle's sake -- if chronic sufferers don't get help, acute ones shouldn't be especially entilted to it. (I wonder if that is part of it -- people can imagine being helpful for a limited period of time, but figure it's the person's responsibility if the issue will always be there? Maybe even subconsciously if they don't think that all out...)

Thanks for all the feedback! It's nice to know that my issues sound familiar -- especially the clumsiness, which most people think is really weird, and I've seen other posts where some have talked about how much water they drink, and I've never encountered people who drank as much as I did, so that's nice too! Also fun to hear I'm not the only one that kept getting handed useless inhalers. I had been suspicious of that "low blood volume" thing, and I have no idea if what he measured (whatever it is) was fixed by the meds or not. I haven't had a tilt-test, and I'm afraid I can't do any of the do-it-yourself type things now, as with the medicaiton my heart rate is perfectly normal. I've gone from resting 70 to 80bpm with the pregnancy, but I understand a slight increase in resting HR is typical, and with super-strenuous excerise I can sometimes push 140-160bpm, and I'm pretty sure that's normal as well. I did briefly try to go off the meds once I got pregnant, as there is a higher rate of miscarriage on them, but after just one day of realising I couldn't walk down the corridor without reaching 190bpm and a brisk walk would shoot it over 200, we made the decision that low-oxygenated blood rushing past the placenta was way worse than a slightly higher rate of miscarriage, and I'm taking them again. I'm a bit scared of starting a medical saga again, as I now have medication that works for the most disturbing problem (heart rate) and happens to fix the excessive sweating too, which wasn't so bad but makes my arrival after the walk to work a bit more socially acceptable! Now I'm just left with drinking lots of water, odd clumsiness issues, and perhaps CFS-like symptoms. From what I know of my husband's case, there doesn't seem to be much that can be done about CSF-things other than putting in place coping strategies, which I already have. Is there any hope of help for other symptoms? Is there a benefit from having a specific diagnosis? I'm also scared they might make me stop the medicaiton which appears to have worked magic -- the closest attempt to match something typically prescribed in this country did have a measureable effect, but nothing like the cure my current meds produce. But I suppose knowing who to go to if things take a turn for the worse would be good. I see there are some UK specialists listed on the physicians page.

Oh, I'm really glad to hear that other people have experienced the "clumsiness" too! I don't hit door frames too often, but when I do, it's startling enough (and occasionally embarassing enough -- like when I clipped the filling cabinets in the hallway when showing a new person around work) to take note. And since when I did gymnastics, balance beam was my best event, people had a lot of trouble understanding how I could seem so clumsy otherwise. Glad to know I'm not alone

I've just learned the word "dysautonomia" but seven years ago I was told I have "some sort of autonomic nervous system disorder". I'm interested in seeing if there might be a more specific name for my condition, one, because it sounds so much better than the vagueness of "some sort of", and two, because I've recently become pregnant and having something with a name might help explaining to my doctors why I'm taking an off-license medication and help them with understanding any complications my condition might cause. I've been reading the stuff on this website and on the NDRF site, and I'm having trouble identifying any syndrome that seems to match my issues, so I'm wondering if you here might be able to point me in the right direction. My story is this: My major symptoms (without medication) are - exertion-induced tachycardia (a flight of stairs would send me 190-200bpm, real exercise could shoot my heart rate to 240+ -- and I probably don't need to put the disclaimer here, but it is so ingrained in me to emphasize that I am not exaggerating, and that I do know how to properly measure a pulse, as most people tend to disbelieve the numbers. One thing is I understand there are no abnormalities at all in my heart beat -- I had a whole floor of nurses over to admire my "absolutely perfect" EKG trace at 198bpm after 6 minutes walking on a treadmill) - excessive sweating - what I can only describe as elevated kidney function: I'm constantly thirsty (before I drank 3-4 litres of water a day, with the pregnancy I probably go through an additional litre or two, and I wake up in the middle of the night absolutely parched) and water seems to "go through" me faster than other poeple. One initial thought of diagnosis was diabetes insipidus ("water diabetes"), but I have no trouble concentrating urine when I have to. Now that I've reading pregnancy books, the increased thirst and need to urinate that seems to be a common pregnancy symptom, due to more active kidneys, matches quite well what I experienced before, and pregnancy seems to just cause even more of the same. - low blood volume (which was diagnosed by taking my blood pressure lying down and sitting up, but I have no idea if it increased or descreased) I probably would have never explored these symptoms except for an accident of asking my primary care physician about what a good "target heart rate" was for exercising, as I was trying to lose weight. She responded by asking what my heart rate was when I exercised, and then was good enough to (1) believe me and (2) refer me to cardiologist. I spent about 9 months on a tour of most of the big machines in the local research hospital, and was very lucky that the cardiologist saw me as an "interesting mystery" after a neurologist and an endocrinologist blew me off, although he admitted he was completely out of his depth. However, we never got to the bottom of things, as the first two symptoms (tachycardia and sweating) were solved fortituously when I was prescribed bupropion (Wellbutrin/Zyban) for a recurrance of depressive systems, which I'd had a decade before, due to stress caused by issues with my insurance company. At that point, I was also only months away from moving from the US to the UK for a new job. The cardiologist told me the next step he and the friends he'd gotten interested in my case would have taken was to put a catheter in my heart to check its sinus node, and if that was normal, then they would resort to trying out drugs to see if they could fix the symptoms. He said he would have started with beta-blockers, but anti-anxieties like bupropion would have been next on the list. Given that the major problem, tachycardia, was fixed (the cardiologist said my heart would have gotten tired and stopped after another 30-35 years of heart rates like that), I was about to leave, and I had little interest in sticking something inside my heart, we left it that I'd continue taking bupropion the rest of my life and I had "some sort of autonomic nervous system disorder". A small wrinkled occurred in the UK where bupropion is only approved as Zyban for short-course prescription as a smoking-cessation drug. The doctor here suggested I take Elavil, which only sort of worked. My heart rate rarely went over 200, but I still hit 170 on stairs and 190+ with exercise. After about 6 months on that, I was able to see a specialist who approved off-license use of bupropion and I've been taking it ever since. To round things out, a few other things that I had never connected to the above systems, but upon reading things online I wonder if might be related: I see that there is overlap between dysautonomia and CFS. My husband has CFS and I've been wondering recently if I have a mild form, as I seem to have some of the same symptoms. In particular, I am constantly fatigued (before the pregnancy! with it, I can barely keep my eyes open) and have post-exertional malaise--this latter even worse than my husband, for while he can understand not being to do something on saturday *and* sunday, he doesn't seem to understand how I can't do things two weekends in a row. And finally, two really odd symptoms that I have no idea if they could have relationship, is that when I'm tired and/or stressed I get clumsy in a particularly odd way. I seem to lose gross motor control preferentially: for example, I can still do millimetre-precision craft work but have trouble getting a dish into the slots in the dishwasher or aiming myself appropriately through a doorway. The tireder I get, the motor control vanishes in a gross-to-detailed manner -- I have to stop craft work when my wrists won't turn the pliers properly, though my fingers are still up to the fine maniuplations. Also, usually mostly related to stress, but sometimes fatigue, I will get strange pain in my extremities -- fingers first, than hands and feet. It's weirdly diffuse, kind of like they are being compressed somehow, and feels more muscular than involved with the joints. So, I've been reading the dysautonomia stuff, and nothing quite seems to fit. Perhaps I'm missing something, but it seems there is either POTS or issues with syncope. I've never had faintness problems, except perhaps a little bit of dizzyness when really tired. I don't seem to have any positional issues either (although there was that low-blood volume diagnosis). In fact, I now believe that I had these symptoms during at least the last 3-4 years of competing gymnastics, where I never noticed any problems with being in all sorts of side-ways and up-side-down positions with rapid transitions. They kept giving me inhalers for "exercise-induced asthma", which did absolutely no good -- I now know I felt like I couldn't breathe becasue the blood was moving through my lungs too fast to be properly oxygenated, not anything to do with my airways. I can still throw a handstand or arobatic element without any ill effects (other than my joints telling me I'm too old for that now...), so I'm guessing I wouldn't have POTS. But perhaps I'm wrong about that? I see people do yoga without problems too. Does anyone have any suggestions of what I might have, or where I might look? Sorry for rambling on for so terribly long, but I was trying to get everything out.