Katja

I took 10mg of Propranolol once, and was wiped out almost immediately. It took me several hours to get over it. I also felt very depressed, although I wasn't prior to taking it. I didn't have a chance to experiment with it further, because I have a history of severe asthma, and should not have been taking it in the first place.

I think in English it's called a Microneurography (I haven't had one). I did get a few hits when I searched for it in Dinet.

I have visual symptoms 24/7 (for as long as I can remember), but they worsen dramatically when I have been upright too long on any given day, even if I am sitting down, or when am experiencing pre-syncope. I have visual snow, palinopsia (increased afterimages), and see halos around lights or any object against a contrasting background, like letters on a page or computer screen. I don't know if this has anything to do with my autonomic problems, however, though they appear to influence the intensity. My vision also changes briefly when I stand up, but usually I'm so disoriented for a few moments that I still haven't managed to figure out exactly what happens then. It appears to dim a bit, and almost seems to get "scrambled" around.

the company also makes a related product called ResQPOD. If you Google it, you find a lot more information. It sounds promising. If you buy one, let us know how it goes!

I like the Prevention WS-820PV very much (I bought it from Amazon). It's very accurate, unlike many wrist monitors, and has a memory function. However, you would have to record/chart the readings manually in an Excel file, or something similar. I'm not sure what you are looking for, though - these monitors do not give you a continuous reading, and won't read your blood pressure unless you're perfectly still. They're also very position sensitive (they must be held on the same level as your heart).

When people comment that my grandmother (who has similar, presumably ANS issues) doesn't look sick, they almost always mean to say that they don't think she really feels as sick as she or my grandfather say she is, and/or that her problems are just the result of somatization or overreacting to benign physical symptoms, or whatnot. Mostly she gets this from our family, others tend to be more considerate . My father's wife used the same reasoning to ignore my father's severe hypertension. I don't usually get it because I typically do everything to avoid telling people that I'm sick in the first place. Sometimes I get this comment from my mother when I have to tell her that I can't do something, but she usually retracts it after I explain to her what the physical symptoms in question are, and show her what happens to my blood pressure and pulse rate upon standing up (numbers always work with her).

I was about to post the same link as Sandy. Every unorthodox treatment has its success stories, but it's usually unclear what caused the "success." For example, many people tend to experience chronic illnesses in cycles. People tent to seek out "radical" treatments when they are at their worst. When they feel significantly better months later, it's really impossible to say, sometimes, whether the treatment indeed worked, or if the illness was just running its natural course, i.e. they were on the cusp on an up-cycle to begin with, and would have felt an improvement in their symptoms even without treatment.

that happens to me, exactly.

neither do I, for the most part. it's stretchy enough to gross out my family, though, particularly on my upper arm :-P.

yes, Joint Hypermobility Syndrome can cause POTS. Dr. Grubb mentions it in his 2006(?) "Concise guide" article. you can also take a look at this article: Gazit Y. et al. 2003. "Dysautonomia in the joint hypermobility syndrome." The American Journal of Medicine, 115 (1): 33-40. you don't have to have stretchy skin to have hypermobile EDS, as far as I know. the skin is usually either normal, or only mildly hyperextensible in this type, so you probably shouldn't rule it out. this is mentioned in this article, for example: http://www.ncbi.nlm.nih.gov/bookshelf/br.f...e∂=eds3

you're welcome! I'm glad you found it interesting .

some doctors consider Joint Hypermobility Syndrome to be a mild version of EDS. these are the diagnostic criteria for it: http://www.hypermobility.org/diagnosis.php

it's been corrected here: http://www.marketwire.com/press-release/Ca...ers-900633.html

I'm always conscious too that it's only a mood swing. In Russian, we say something like "you could just as well call it a pot," which is how I feel by now regarding my moods. It doesn't really matter if it's due to bipolar, ADHD, epilepsy, or dysautonomia, which is also how my psychiatrist feels. We've found that Neurontin and Strattera work great for me as antidepressants and anti-anxiety meds, and I have either an adverse reaction or no reaction to every other psych med we've tried. It's funny, I guess, that both of those are also prescribed for dysautonomia, and often do jack for unipolar or bipolar depression (or ADHD, for that matter). Good luck.

Hi, I was previously diagnosed with bipolar disorder, so I spent a lot of time learning about it. It is far more complex than the current diagnostic criteria imply, and I don't think it's at all unusual to have symptoms that occur more than once a year, or last a very short time. It's called ultra- or ultradian rapid cycling. Symptoms occur on a very large spectrum of severity, so to say, as well. While it is not necessarily the cause of your symptoms, I don't think that it should be ruled out. Unless you have other symptoms of epilepsy, it seems a more likely explanation than interictal dysphoric disorder, as well. I do have a similar problem, by the way, but it's hard to say what's going on - previously I was diagnosed with bipolar disorder, but my present psychiatrist doesn't believe I have it, and suspects that I may have temporal lobe epilepsy. I also have ADHD, which can frequently cause mood swings, irritability, hyperactivity, etc., by itself. I'm also not yet officially diagnosed with autonomic dysfunction, so it may not even be a factor in my case.

I haven't had a chance to watch it, but here's a link that may be interesting: "Morning heart rate surge in postural tachycardia syndrome" (audio/video presentation) http://www.scienceondemand.org/sessions200...archQ=undefined

Thanks! I'll bring that up with my doctor. I think a lot of doctors hypothesize that JHS and the hypermobile type of EDS are synonymous? I was kind of confused trying to figure out what the difference was between the two, researching online. Dr. Grubb refers to it as JHS in his article.

okay... I may have figured out a potential cause for the joint and muscle pain. It's plausible that I have joint hypermobility syndrome, which can cause diffuse musculoskeletal pain - I have hypermobile joints (match the criteria easily, I just never realized most people could not bend that way), unexplainable frequent joint injuries since childhood, weird stretchy skin (always had fun with that), easy bruising. Dr. Grubb mentions in his 2006 "Concise Guide" article that joint hypermobility syndrome is associated with POTS (up to 70% of the former have some form of OI), and may in fact be a cause of it in some cases. Gazit, Nahir, Grahame, and Jacob (2003) also link it with dysautonomia. Some other authors think that it may play a role in both CFS and FM. Well, that might be one unexplained symptom down . And if nothing else, the fever could just be psychogenic (http://www.psychosomaticmedicine.org/cgi/content/full/63/3/476) - it isn't always present along with other symptoms, and god knows I'm under a lot of stress during flare-ups .

It was a brain scan - it was done over two years ago, but several months after I started having symptoms. It's good to know that should be ruled out .

Thanks... Hopefully the tests will clear some things up, and I made an appointment to see a specialist in November. I asked them to put me on the cancellation list, so hopefully I'll get in sooner.

Hi jump, Thanks so much! I'm glad to hear it's not just me. Thank you for the links - I'll see if I can get my doctor to look at some of those articles the next time I come in.

haha, that's what I thought - I'm not sure why my doctor sees them as mutually exclusive . I'm also curious about how the Epstein-Barr results are going to come back, since it might clear up some things either way. I am very glad my doctor is eliminating whatever she can think of, and who knows, she may confirm one of the things she's testing me for - the weird thing is that she made it clear when I spoke to her on the phone yesterday that she gave me the referral for my own peace of mind, and so that I'd get the idea out of my head, but that personally she doesn't think there's any good reason to even do an evaluation before assuming that there's no cause for my symptoms (if the rest of the tests come back negative). According to her, all POTS is, is when "you're riding in the subway, suddenly get palpitations, and feel like you're going to pass out." That's after she said she vaguely recalled hearing something about this thing called "POTS," ran out of the room to look it up online, and came back, of all things, with DINET printouts for me, claiming that fatigue was not a POTS issue (?).

Thanks! I have considered CFS on and off for a while, but when I previously looked at the diagnostic guidelines, my symptoms did not seem severe enough to me (maybe I was wrong). There were also a number of reasons at the time that I was afraid to bring up the possibility with my then-doctors. What seems possible is that I have ANS dysfunction with something like "CFS lite" or "CFS onset," as well as possibly other things, tacked on top of it (or the other way around). I think some doctors hypothesize that there is a close relationship between the two. Assuming that there may be a genetic predisposition or whatnot running through my family, while ANS problems would explain all of my father's past and present symptoms, he has never had any additional symptoms of CFS at all (my grandmother has/does, however). I think that it would be possible for me to find a specialist around here to look at both of those seriously (I'm currently in the States), I just need to be willing to wait a few months. The doctor is ruling out lupus - I'm not sure about MS. What's funny, now that I think of it, is that after telling me some of what she'll be testing me for, and that she /does/ want to rule everything out, she said that she expects to find no organic cause, and that these symptoms are "just the way I am" - in which case, whether I have it or not, I don't understand why she's ruling out dysautonomia on the account that it doesn't account for a few of the symptoms (when, apparently, "no organic cause" does, too)?

She did say she'll check for it. I'll get the results of those tests in a week, or so. I got blood work done the first time, but everything was within a normal range. My liver enzymes, thyroid levels, etc. were also checked shortly after, actually, for a different reason (I got an EKG, EEG, and MRI, as well, thanks to my then-German health coverage).

Thanks for the suggestions! My doctor is checking me for every rare autoimmune disorder, and anything else she can think of - I don't know if she's looking at Hep C. The viral illness I had at the onset was more of a nasty cough, and I didn't get the muscle/joint pain that time around, so it might not be that... It seems like there may be more going on than POTS, but it also seems like I match the diagnostic criteria for it, in any case, and there are things it would be very difficult to explain otherwise. I was also thinking that the TTT may not be necessary. I guess the main reason for wanting to have one at this point is I /really/ want answers (even more so than treatment, which is probably silly), and I can't make an appointment with a specialist any earlier than November or so. I've been getting some of the symptoms treated for a while by my very confused psychiatrist, who incidentally also thinks that dysautonomia is the real problem. Something funny, actually - the first flare I had, I had the fever, but there was one time it suddenly went down to normal, for several hours after I had a glass of beer (I normally don't drink - and never do anymore). Alcohol tends to occasionally help my father's and grandmother's symptoms immensely, as well. In any case, is there any way to explain the effect that alcohol had on the fever? Previously, drinking something that was /very/ mildly alcoholic has temporarily helped with chest pains/discomfort, also.