Told I Have "some Sort Of Autonomic Nervous System Disorder"

[sylvan]

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.

[corina]

hi sylvan, welcome to the forum and congrats on your pregnancy!

as we're all so different, i bet someone here can relate to your situation and help you answer your questions. i know there are dysautonomia specialists in the uk who might be able to help you (in case you are in need), also several of our members are located in the uk who might be of help too.

i do recognize the "clumsyness". you mentioning it brought a smile to my face. as i'm doing miuch better now i'm not clumsy anymore, but i do remember that it was brought on by the extreme fatigue. i learned that i needed to get in my chair and rest which really frustrated me at times.

corina

[comet555]

I have similar exercise symptoms to you and was always handed an inhaler when growing up as though that would be the solution to all my problems! I kept telling the doctors that the inhaler does nothing but they never really believed me (or had no clue).

I did have to laugh about your comment about going through door ways. I quite often bump a bit of my arms or catch part of my pants on doorways as I somehow misjudge it a little bit when going through. Not all the time mind you but enough to make my husband think I'm clumsy sometimes. I've always thought this was odd as I'm actually really coordinated and good and pretty much most sports I try. So I always felt silly bumping into things.

Unfortunately I never really saw my occasional clumsiness as a symptom of anything. I have plenty of symptoms that on their own seem just sort of laughable like telling the doctor you sometimes bump into the door frame, but not always!

[sylvan]

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

[Katybug]

Hi Sylvan. I, too, relate to many of the symptoms you describe. I have a POTS diagnosis but we are still testing to determine wich kind of POTS and I have prior health issues that complicate things as well. I agree with Corina that the best thing is to find some of the doctors in the UK that specialize in dysautonomia because these disorders are so complicated and are often connected to something else, for example you mentioned a possible link to CFS. I have a link to tick-borne illness. The specialists are usually familiar with these and know what tests to look at. I'm sure the folks from he UK that participate here will be able to give you some leads on the doctors. Good luck and congratulations on the pregnancy!

[jbenz1772]

I can be added to the clumsy list as well. I am constantly misjudging doorways, corners, tables and such. I have complicated migraines associated with my POTS/ small fiber neuropathy that mostly affects my right eye. So the majority of my bruises are on my right side of my body. Sometimes I even walk on a diagnal. Ha, and I used to be a dancer. Not very graceful anymore!

Jen

[MightyMouse]

Low blood volume cannot really be diagnosed by blood pressure. The definitive test for low blood volume is done by a blood test, usually done in the Nuclear Medicine department at a hospital--they draw blood, they radiotag your blood, reinfuse you with it, and then do another draw to calculate. You can have a precipitous drop in BP without low blood volume if you happen to have a collagen problem where your veins and arteries allow too much blood to pool when you're upright (you can have that WITH low blood volume too--I do).

Nina

[potsgirl]

Have you had a tilt table test done yet? Sorry if I missed it somewhere in your post...If not, you can do a "poor man's tilt" at home. Get yourself a good BP monitor that also shows your heart rate, and then lie down flat for about 10 minutes. Jot down your numbers (it's easier if you have a friend who can help out, especially if your BP drops too low), then stand up slowly and take your numbers again while standing. It's interesting to take these numbers at 1, 3, 5, and 10 minutes to see what your numbers are.

The definition of POTS from my neurologist at Mayo/Scottsdale is when your BP doesn't go too much up or down, but your HR jumps by at least 30 points. If your BP numbers drop a lot, but your HR doesn't get up to 30 points over your lying HR, you probably have a dysautonomia issue called "orthostatic intolerance/hypotension". Some doctors believe that your BP can drop by 20-30 points, but if your HR goes up at least 30 beats per minute when you stand, you may have POTS or both. Give it a try and let us know what you get. Many of your symptoms could be POTS or dysautonomic dysfunction, but only your doctor can tell for sure. Like others suggest, please go to a specialist, where they should do this test.

Example: Lying, after 10 minutes - 95/65 and 60 heart rate (I have a pacemaker, it's almost always 60)

Standing, 1 minute - 75/62 and 118 HR

Hope this helps!

Jana

[sylvan]

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.