Katja

Thanks cma - I've been looking for something like this!

I think that small fiber neuropathy can involve either the sensory or autonomic nerve fibers, or both.

I felt terrible at .15 mg - although I'm not sure whether any of the other symptoms were due to the Florinef, my blood pressure went too high (from 115 to 135-140 supine, and up to 155 sitting), and my neurologist had me decrease the dose. I felt fine again within a week, or so, and my blood pressure is okay now. I don't seem to have any noticeable side effects at .1 mg, which is my current dose, and it does help a lot with most of my orthostatic symptoms, including the cognitive slowing. I've been taking it since November, and I'm very happy with it, so far. I've taken so many meds by now that I'm mostly relaxed about side effects, and no longer worry about them until they actually happen, since it's impossible to predict which ones I'll get, anyway . The worst that could usually happen is that at some point I'll feel very awful for a few weeks, until it becomes clear that the dose needs to be decreased, or that I can't tolerate the medication. At best, I'll find something that will give me significant short- or long-term relief from symptoms, the possibility of which is usually worth the risk of feeling terrible for a while. If you're worried, maybe you could ask your doctor to start you on a lower dose? I started at .05 mg, once daily, for two weeks, before I went up to .1 mg. I sometimes get heat waves and hot flashes after being upright too long. I'm 25. I don't know the answer to your third question.

since they don't cite it, I'd guess that it's one of their own observations.

I'm sorry things are so bad right now - I hope that you feel better soon.

actually, my grandmother suddenly got a lot better at menopause. I guess it varies with every person.

I get more symptomatic often, from sitting behind the computer too long. I'm not sure it has so much to do with the computer, as with sitting in place, without moving much. I try to get up and walk around every so often, or at least flex my legs a few times, which sometimes helps. I've been taking Florinef for a bit over a month, and so far, I love it - it's difficult to tell how much it's objectively helping with my blood pressure or heart rate, but at least I feel human, and I have more cognitive function than in years. I'm taking it in addition to 5 other daily meds, as well as 2 PRN meds, and I'm extremely sensitive to medication. I would give it a try, at least.

I'm from eastern Europe, though I've lived in western Europe, as well. This kind of attitude isn't unique to the States, unfortunately - if anything, it's worse where I come from. I found it goes over better when I explain everything in 'objective' or removed terms, instead of talking about symptom severity (e.g. "this is what my body does when I stand," instead of "this is how badly I feel when I stand").

I have a diagnosis of unspecified dysautonomia. my doctors think it may be POTS, but whatever diagnosis they give me, I'll probably keep telling people that I have ANS dysfunction. it does give people some sense of the scope of it - more so than saying that I have tachycardia or hypotension when standing up.

Melissa - do you know where I can find this information? my ANS doctor, whom I otherwise like, seemed reluctant to discuss this, though he admitted that one of my meds (Strattera) could be a problem (I think I may have given him the impression that I was looking for any excuse to drop my other meds - or he simply didn't want to step on someone else's turf). I wanted some information to bring to my psychiatrist, so that I could discuss this with her, but I'm having trouble finding anything. I had severe symptoms before meds, but I'm trying to rule out the possibility that I'm getting rapidly worse due to anything I'm taking right now - also given that Strattera caused severe postural hypotension when I was at a higher dose.

That seems like a really good idea (luckily, I have one of those doctors). Thanks!

yes - I now have to shower sitting down in the bathtub, and using only lukewarm water. otherwise, I often feel much worse, and function at about 50% of my usual capacity, for the rest of the day. I always lie down for a while immediately after a shower, and then put on my compression hose before getting up again. I used to get very shaky afterwards, but now I'm usually fine, if follow this routine.

I wear waist-high 30-40 hose, almost all day, every day. They don't bother me, but I know some people can't tolerate them. They take me from about a "2" to a "5," in terms of how I feel and how well I'm able to function. I barely even notice that I'm wearing them, but that's probably because I'm so uncomfortable without them. I have to wear some kind of abdominal support with them, though - otherwise, they don't help much (since the blood just pools in my abdomen, instead).

is it possible that you would've done better on only one, or two of the meds you were taking? are you and your doctor sure that you were reacting badly to all three? what about trying a lower dosage of one, or two of them?

my grandmother, who was diagnosed with ANS dysfunction in her 30's, developed symptoms in her late 20's, after her first pregnancy. eventually her symptoms got better, then returned, much worse, after her 2nd pregnancy (she was diagnosed a few years later). after that they would tend to come and go, get much worse, get better, whatever. she had severe episodes of tachycardia, along with other symptoms, as well as fatigue. when she hit menopause, she suddenly improved dramatically. she still has constant problems with fatigue and has difficulty being upright, but it's not nearly as bad as it was in her youth. I doubt there's any way of predicting what's going to happen in any individual case, though there seem to be some trends (I seem to recall that people are more likely to recover from post-viral or 'pediatric' POTS).

I've been diagnosed with an unspecified type of dysautonomia, which my doctors think may be POTS (they're running me through the tests some time in the next couple of months). I recently found out that my grandmother was diagnosed with "autonomic dysfunction" in her 30's, as well (in Russia), due to random episodes of severe unexplained tachycardia, along with other symptoms. my father has some weird symptoms possibly related to ANS dysfunction, as does my sister. I think some types of POTS or dysautonomia are heritable, but not necessarily all - as far as I know, hyperadrenergic POTS is generally considered to be a genetic disorder, and there are more rare types of genetic ANS dysfunction, as well, such as Riley-Day Syndrome (familial dysautonomia). if something like Ehlers-Danlos Syndrome is the cause of ANS dysfunction, that's heritable, as well (though I guess whether the 'faulty' collagen ends up causing ANS problems in your kids is less certain). do your doctors have any ideas as to what the cause of your POTS is?

Ugh.. I can only give you my experience. Seroquel made me agitated and borderline insane at a few hundred mg, eliminated my appetite, and gave me severe hypotension when I initially began taking it. At least it helped with sleep and anxiety, but otherwise my reaction to it was very strange. Risperdal, at .125 mg, didn't do much, but I suddenly started needing a lot less sleep (which is, of course, the opposite of what's supposed to happen), so we yanked that before it got any further. I have a very recent diagnosis of as-yet unspecified dysautonomia, but I can't really say if that had anything to do with it. I had a Bipolar diagnosis at the time, but now I have the vague diagnosis of Mood Disorder NOS. My psychiatrist can't make heads or tails of my medication reactions, and says that they're not typical Bipolar reactions, just really bizarre ones. I guess the only potentially useful advice I can offer is that after being on the med-go-round for over two years, it's become very clear to me that the only way to find out how something will affect me is to take it, and until then, it makes little sense to try to guess what it will do - I've gotten some really nasty surprises, but I've also come across some "contraindicated" or "unusual" meds that I couldn't have lived without. That said, it is good to know what to watch out for, before taking something, and to have some kind of valid reason for taking it in the first place. I think the most important thing may be to find doctors whom you can trust. If my ANS doctor and psychiatrist thought it was in my best interest to try yet another antipsychotic or SSRI, however nightmarish my prior experiences, I probably would (if anybody else suggested it, I would get a new doctor).

Hi Julie, Thank you so much! I haven't read your story before, but I'm so glad you told me. Maybe that could explain why I'm so sensitive to meds that mess with serotonin. Two of my psychiatrists have theorized that there is something idiosyncratic about my brain/body that makes it go completely haywire, whenever I try to take one of those meds. Concerning trying an SSRI at an incredibly low dose, I'll bring it up with the ANS doctor, as well. If I gave the impression, I didn't mean to sound like I am unwilling to take psychiatric meds. Of all people, I've never been uncomfortable with having a "crazy" label (aside from dealing with the ignorance surrounding it), and am very pro-med, if anything. The reason I was asking if anyone was similarly helped by treatments that have no direct influence on mood or anxiety levels, is that I am trying to figure out if my anxiety/depression could have a physiological basis. If it is secondary, then it may have practical implication for my treatment. Does that make sense? For me it's not an issue of quitting meds, or shedding a label, unless either is warranted - I just want to find something (anything) that actually works . Bleh.. Sorry, I'm very fuzzy tonight, so the preceding paragraph is probably a mess. So when it comes down to it, if there's any reason to believe that it may help my physical or mental symptoms, I'll gladly try it. The reason serotonergic meds freak me out at this point, is that they really screwed me up (I'd rather not elaborate) - and I'm usually far more willing to put up with nasty side effects than my doctors are! My psychiatrist would probably be even more scared than me to try them again at this point - she's never had a patient so med sensitive, and with so many freaky idiosyncratic reactions, as me, and she's one of the competent ones. She likes me, but I think she finds the process of treating me kind of nerve-wracking. Thanks again! This may really help . -Katja

flop - thanks, that may be an idea I could bring up with the doctors. In my case, the problem is that I have consistently had dangerous paradoxical reactions to them - not simply a matter of feeling really crappy. This has happened, in each case, at the lowest (conventional) doses, and includes any meds that mess with serotonin receptors, not just antidepressants.

Thanks! I'm glad to hear that other people have had similar experiences. I knew that ANS dysfunction could cause anxiety and brain fog, but it seemed odd that simply normalizing my BP/heart rate (to some degree) could make a very significant, immediate difference. ajw4055 - I haven't been able to tolerate any serotonergic meds, starting with Zoloft. I hope you find something that helps with the cognitive part, as well.

Julie - that sounds so familiar! No psychiatrist has been able to explain why I read every book I could get my hands on when I was a kid, but gradually lost the ability to read starting in late adolescence. I'm diagnosed with ADHD, but ADHD doesn't suddenly "get worse" like this. Concerta has helped marginally, but it has been one of the most difficult symptoms to treat. The feeling like I'm only "half there" is too familiar, as well, and is maybe the symptom I've had the most difficulty living with. It's great to hear that you've found something that helps!

I'm sorry if this has been asked before, but I was curious - for those of you who have psychological or cognitive symptoms on top of the physical ones, has treating the latter helped with the former? I know that antidepressants, benzodiazepines, stimulants, and so forth, are used for both, so I'm not as interested in them at the moment, but I am curious about treatments that are only prescribed for the physical symptoms. The reason I ask is because I recently got my hands on some thigh-high 20-30hg compression hose, and I've found that so far, as ridiculous as it is, they have helped more with symptoms of severe anxiety, brain fog, and diffuse psychological malaise, than any of the dozen or two psych meds I've taken in the past few years, maybe combined. This includes SSRI's, NRI's, amphetamine-based stimulants, methylphenidate-based stimulants, anticonvulsants, antipsychotics, benzodiazepines, and a few other miscellaneous meds. So, this is what I wanted to ask: has anybody else found that treatment aimed only at alleviating physical symptoms (of ANS dysfunction) has helped with symptoms of anxiety, depression, cognitive dysfunction, and so forth? If anyone's curious, the thing is, I was dead-sure for the past 9 years that I had primary psychological issues, and aside from pissing off a couple of doctors by being over-informed, and frustrating a few who didn't understand why I was having freaky medication reactions (though they didn't doubt that I was having them), I'm a psychiatrist's dream - the pleasant, respectful, compliant patient who will try virtually any medication, and put up with virtually any side effects, short of a paradoxical reaction. Not sure if that's relevant, but I genuinely tried to get better - in other words, I am not the reason that my treatment has mostly failed. I'm waiting to see an ANS doctor (in 2 weeks), but have no dx yet. My psychiatrist, however, is certain that my physical symptoms, at least, are due to a malfunctioning ANS. My GP thinks everything is psychogenic, though she gave me a referral once she saw my blood pressure start out at 110/60 supine, then become completely undetectable upon sitting up, then settle down at 90/70 (still sitting). I'm also hypermobile, with some skin involvement. Not sure if it's relevant, but I had a massive flare-up of joint injuries and pain, right around the same time that I first developed psychological symptoms (about 16 years old). The more severe ANS symptoms didn't begin until 2-3 years ago, after some kind of viral illness. Sorry if this post is a mess - the fog is really thick right now. Thanks!

John - side effects like that (withdrawal effects that last for 2 years, etc.) should be extremely rare, and sound kind of suspicious. Where did you read about them?

summer - your description of visual snow matches mine. I don't have migraines, but I do have a family history of them, and my psychiatrist believes that my visual disturbances are neurological in origin and indicate that I either have something called "persistent migraine aura without infarction," or an odd presentation of simple partial epilepsy. I haven't had a chance to see a neurologist yet. I haven't found much information on it, but here's a link: http://porillion.wordpress.com/2008/09/27/...-snow-part-one/ Curiously enough, until a few weeks ago when I stumbled upon an article, I thought my visual disturbances were "normal" vision! Even stranger, my younger sister turned out to have identical 24/7 visual disturbances, although she does not have the same health problems (we think). I am very nearsighted, but her vision is perfect, and no problems have ever been found during our eye exams. Both of us also have many floaters in our vision, though ours are semi-transparent rather than black.

I recall reading that a "burning" smell is very characteristic of migraine auras or simple partial seizures. You can have a migraine aura independent of the headache itself, as you probably know. Visual snow is also characteristic of a migraine aura, I think (I wrote some more about it in the other thread).