erik

In addition to those already ill, have docs discussed an anti-viral "prophylactically"? It can be considered for those with increased risk of complications: http://www.cdc.gov/h1n1flu/recommendations.htm#5

Stuff like Sjogren's or SLE (Lupus) can zap multiple things and present in various orders (Sjogren's does not always hit the eye/saliva first)... they're also auto-immune like Hashimoto's. They can include at least a few of your symptoms. Both are "very long diagnoses" averaging 7 and 10 years respectively, if memory serves. Could give them a quick overview and see if you happen to find a couple other matching symptoms or risk-factors. Even if they don't match really well, they can be things to keep on the back-burner as possibilities. They can include neuropathy... hence ANS damage/dysfunction. Of course, many other things can as well, as you already know If some testing comes up, it might be somewhat convenient to "widen the scope" and include seeking markers for these. (Hair-loss + autonomic/O.H./O.I. makes me think Addisons... but I have a hairline trigger on that and you say your hormones are ok, so not likely

I love the saline I.V. idea... always so refreshing & invigorating! Would be nice to get a few under non-urgent-care conditions! I'd like a chilled I.V., shaken not stirred please.

"Infotainment" is a tough balance, I imagine. Taking on medical issues in that context is kind of asking for trouble... maybe even best to stay superficial!?!? There can always be topical gems that come up, even if the format is "troubled"... well worth looking out for. Hopefully Oz can find a balance that satisfies some folks. (I won't be one, as I'm not a tv-talk-show sort of fellow... it reminds me of the childhood traumas I endured such as Phil Donahue and "shopping"... which is like waterboarding to a young inquisitive boy's mind... it doesn't cause actual death or brain damage, just simulates it incredibly well . I find "The Dr. Dean Edell Program" to be solid medical "Infotainment", despite the fact that it operates on the openly flawed implicit premise of being able to garner medical advice in a quick (public) phone call! But radio is typically more accommodating of long-treatise, open-form or odd, ongoing, rich discussions than ADHD-TV formats... But science-interest stuff like discovery, natgeo, et. al. proves that some generalized assumptions about TV (and viewers) are false or overstated.

I'm not a clonodine expert but I think that the lowering of systolic is the expected response. Not sure about the diastolic effect. Clonodine is supposed to reduce norepinephrine output and "lower sympathetic tone" which was probably what is suspected of causing your typical excessive BP climb from being upright for a while. Perhaps there is an acclimatization period or a specific technique to using it, like only timing it with specific periods of time when you'll be upright and exerting? I should yield to someone who knows first hand... but there's my dangerously-half-informed info based on prior reading, for what little it's worth

There seem to be "theme cruises" pretty often... maybe an "autonomically heat-intolerant, exercise-intolerant & frequent-small-meal club" cruise to Alaska could be a fun get-to-gether! Instead of a ventriloquist or stage act, we can have lectures by a professional Dr. Grubb impersonator. Traveling far and seeing stuff while lounging & sleeping as needed/desired has a satisfying feel (motion sickness risk aside). I did manage to stack on a quick 20+ lbs in 10 days on a cruise... so it has it's risks to be weighed

Any of you all taken, heard about, or care to speculate wildly about Cevimeline (Evoxac)? It is an mostly M3 selective muscarinic agonist (acetecholine agonist that binds to muscarinic but not nicotinic sites)... meaning it's like an parasympathetic activator but hitting mostly secretory glands. It is usually used for Sjogren's... to compensate for trademark lack of glandular stimulation, not for all the other potential Sjogren's targets (which apparently can even include POTS inducing neuropathy). Given that things aren't usually "totally selective" to specific receptors (in this case M3's) I figure there might be some bleedover to other stuff that might mean some positive or some negative effects in regards to my POTS. I'm not expecting a Mestinon like thing, since the selectivity to M3 would preclude that, but maybe it will be pro-parasympathetic enough to counter an overactive sympathetic tone (if that's indeed part of my problem, who knows, excessive baroreflex or whatever)??? Anyway, just fishing for experience or totally random speculation here. I don't think it's a very common drug in general and Sjogren's'ers would be a rather rare subset of POTSies. I don't have IBS sorts of stuff but wouldn't mind hearing how one might expect this sort of drug to interact with that realm too. It might end up being a nausea inducer, if nothing else, we shall see.

I might respond well to the opposite... a "3 day feast, followed by a few hours in a refrigerator"... now that might do something for me! Perhaps an Alaska Cruise would suffice!

So good that you have caught it early. Reportedly that gives Tamiflu the best chance of helping the most. We'll be hoping for a speedy recovery and continued recovery for your other son. So sad for anyone to suffer this, especially a young child. I wish you all well.

I don't know about it, but here's a link: http://www.endfatigue.com/treatment_option...t_protocol.html The "key points" at least sound like common sense and/or differential diagnosis which is perfectly fine as general advice. Not sure if there is an innovation beyond that in the "custom tailoring" that they offer or deeper in the website. At least it doesn't seem to involve a 3 day fast, followed by a buffet and an excruciating sauna

Just noticed this "novel insight" about mast cell activation: http://content.karger.com/produktedb/produ...;file=000144042 I guess this means there can be alternative explanation (and treatment) for some who have clear signs of MCAD/S but don't respond to H-blockers. Prior to reading this, I had only hear blame laid on histamines. Just another twist!

Just noticed that arthritis has been added to the "at risk" groups somewhat recently (Oct 15th): http://www.cdc.gov/h1n1flu/groups.htm There must be some here with Sjogren's, SLE (lupus), spondyloarthropathies or other systemic arthritic condition either related or incidental to your dysautonomia. Figured I'd give a heads up that CDC now puts those in "higher risk" and "should get vaccine shot (not live mist)" category which might give guidance or allow earlier vaccine availability perhaps... or might convince a doc to prescribe an anti-viral more easily if circumstances arise. I had been more familiar with the expected complications like asthma... but didn't personally realize arthritis or diabetes would come up too. For what it's worth, I'm leaning toward getting the vac now after being ardently-indifferent for some time and never having bothered with a flu shot before. I'm just getting over a cold which has not been too bad but reminds me how nasty a bad flu can be especially with a compounding condition... and as my body seems to be having more "weird stuff" happen (like needing albuterol occasionally, and now loss of tears) I "feel" more vulnerable overall. Plus I don't want to be a "sic(k) transit" fellow I guess now I am probably supposed to wait until I'm totally over my cold before getting a vaccine???

In regards to H1N1: http://www.cdc.gov/h1n1flu/recommendations.htm For regular flu, I found this from back in 2006: http://www.cdc.gov/flu/han011406.htm As for current non-H1N1 strains, I'm not sure of an authoritative source but for what it's worth, the Amantadine wikipedia entry currently claims the following (without offering direct source citation): "According to the CDC, 100 percent of seasonal h3n2 and 2009 pandemic flu samples tested have shown resistance to Adamantanes and it is no longer recommended to prescribe for treatment of the flu." If you look at the 2006 CDC article in detail... they explain some technical reasons for amantadine and rimantadine to be less or non effective compared to the other options. They say use for Parkinsons or whatever is not affected by these flu issues.

That is wonderful. What truly amazing effort and progress! I'm sure you will continue to get stronger. That is remarkable.

I have this from time to time. Usually not too extreme, haven't vomited or anything. Kind of goes along with a mild dizziness feeling for me. For me it tends to be mild enough that I can ignore it, though it is uncomfortable.

I've had bouts of what I call "Moments of Terror". They are quite brief, but incredibly intense. They have come and gone. I think this specific experience for me has been either falling asleep or suddenly awaking in horror. I seemed to induce one by doing a fast followed by dose of glucose which induced a "relative hypoglycemia" (a huge drop but just shy of absolute hypoglycemia criteria). This is not advised to self administer. This put me into a brief "food coma" nap from which I awoke in terror and very odd feeling (odder than my normal odd feeling states). I had a sense it could be a seizure. Either way, benzos (like the two mentioned so far) are on my mind as treatments for this and other stuff (hopefully some sleep quality & perhaps autonomic benefit too)... if it were truly a "partial seizure" then other meds might target it better. I've also had myoclonic jerks... and other brief floods of feelings (and chronic deja and some jamais vu) while awake that make me suspicious of seizure overall. No confirmation... that's later on my list of medical to-do's.

Do any of these (or others) happen to log ongoing HR then download to a computer? I currently do this with a Pulse Oximeter and it is really handy to have graphs (and keep documented history to show extent & duration of the issue). The graphs make it really obvious and document exactly how my pulse goes up upon standing (and my frequent bradycardia)! I've used it to record overnight during sleep too in case anything radical is going on then. It's a "CMS-50E" pulse-ox (facelake.com or echostore.com)... down side is that it dangles from finger... so I'm wondering if some of these watches or whatever can do the logging???

I believe easy bruising is associated with cushings & pseudocushings too... but other symptoms would likely stand out first.

I survived! I feel like I just completed a triathalon! In a way, I did... (a little clue to the event I was working at I pulled 3 marathon shifts (overnight and partly into the day) plus a couple less strenuous followups. Lots up upright time, but luckily I was able to sit here and there and was always able to move about (keeping circulation going). Mostly night shifts which are quite pleasant in the Hawaiian climate. Thank you all for the tips & support. The bike shorts were critical... First, extra compression was great (combined with my back support girdle thing and rather tight socks). Second, I made mistake of going without one day and found my shorts are horrid chauffeurs... err, chafers... anyway, they tore up my thighs and drove me crazy with every step. Maybe the pain helped motivate me, but I went back to the bike under-shorts and thankfully even with red raspberry inner-thighs (now scabbing over) they kept me just fine on subsequent days! I was getting anxious prior to my gig, knowing my back would give out and that I'd have trouble being upright so long and challenged by frequent urination while being "on post" for long hours. I saw doc and restarted fludrocortisone, which even at my initial dose allowed me to retain water really well through my shifts. I had been off the fludro pending testing but that happened to be postponed. The event was stocked with kids-swimming-pools of ice cold Gatorade, G2, water, etc... it was kind of nice having a "bottomless well" of Gatorade! I normally just use the powder occasionally (and usually just NUUN) since the cost is high. I took steady but modest sips of G2 and water, like you see the tennis players do! I also got scrip for SOMA, knowing my back would be in knots in short order. I did aggressive regime of vitamins, supplements, cautious diet, salt-packets... basically throwing everything at my body that I didn't think would create more problem! I chose to go minimal on caffeine (even though these were very long night shifts) and that worked well, avoiding peaks & slumps and keeping that tool in reserve when needed. Same with my pseudoeffedrine (which triggers norepi & hence vasoconstriction)... just resorted to that a few limited times to assist with extended upright periods. Couple puffs of albuterol came in handy too... between all this, I had only 1 incident where I went more lightheaded than I wanted, but I made it through that. Didn't have occasion to take HR or BP during, but in between days did note my BP was riding in my 130-140 range (my target to avoid O.H.) which works well to help me tolerate upright posture (when I oft get orthostatic hypotension, et. al.). SOMA is still a mystery med for me. I know it's a muscle relaxant, of course. Also an opioid enhancer, but I'm not sure how much it counts as an opioid itself... it's like an analgesic opioid, perhaps, maybe, I think... acting remotely to block muscle pain at source, but not necessarily doing generalized/central opioid stuff. I seem to get a mild anxiolytic benefit from it, as well as perhaps some help with stamina (I guess it's side effects can be indirectly stimulatory, but I think that's during withdrawal, not sure). Anyway, without it I'd have been a pretzel after first day or two! Also, a moderate stream of ibuprofen, very frequent aggressive stretching & my back support girdle thing were critical... I think it helps with abdominal pooling nicely. Thanks to all this, I actually feel stronger (though tired) after the whole ordeal! Today after the event (5 days basically) I'm having some emo-lability, partly from post-processing of the ordeal but also an expected phase for me with fludro (seems to do this for a while when starting it). It's my typical bittersweet sense of accomplishment (some happy progress now but also so sad I couldn't have had benefit of this diagnosis long long ago). A little healthy self-pity for good measure Still unsure what is realistic for me on an ongoing basis, since my condition tends to be episodic/chronic... but counting this as a big accomplishment and sign that my body still has some solid underlying capability (aided by fludro, perhaps also to be helped by future meds from specialists). I also didn't "fog out" and didn't get any panic episodes (those have been rare, but I've had them in the past). I had a couple stress moments but they passed quickly and I just cruised along and pulled things off well enough. I was also ready for failure... but this was the sort of gig where guys are shifted around here and there so at worst if I melted down it would have been a burden but would not have been tragic for my boss and the event. I'm quite proud, relieved, and thankful to you all for your help. Today I've been in "cool down" mode, just enjoying some yoga and belly-dancing... actually just spectating.... watching "Shimmy" and "Namaste Yoga" on FitTV... they can be quite mesmerizing and nice to relax to

I have heard of people being diagnosed based on symptoms combined with a "poor-man's tilt" (or repeated ones, since patient is supposed to have been symptomatic for 6 months or something... right?) My possibly erroneous understanding is that when you stand up on your own, your muscle activity tends to assist your cardiovascular system (especially if you fidget) so if you show the signs during poor-man's tilt you are almost definitely going to show them on a real tilt table. Of course, the "controlled" environment of a tilt-table comes across as more "valid"... is definitely the "gold standard" of diagnosis, plus with that procedure they will sometimes try 1 or 2 drugs that can give better insight. I was scheduled for visit to a doc for tilt table... I fax'd my home poor-man's results (spanning many months, including graphs, etc.) and he canceled me! He said it was best that I go straight to a specific autonomic knowledgeable EP cardio instead of wasting our time. This isn't a "diagnosis" (he cannot do that having never seen me , but an expedited step toward treatment (and perhaps "clinical call" diagnosis or eventual TTT elsewhere). Just another variation... technically I'm still "in process" on diagnosis so I don't count.

I'm still continuing the acidophilus stuff. Going fine. I get "green poopies" kind of like if I'd been going heavy on the salads (which I do sometimes but not recently), which is interesting... makes me wonder if I'm cultivating a nice garden in there somewhere! I'm afraid due to other circumstances I've radically changed many other key things in my regime so there is no hope of knowing if this probiotic is helping me in isolation. For me, thus far, no ill effects and it does happen that I've had better stamina lately (but again other things involved including med changes). I do tend to have a solid, regular and adaptable gut and only few/minor digestive issues (knock on wood). I also happen to take a decent bit of magnesium (my intent is for energy support) which has reputation for promoting bowel movement I think. I happen to take 250mg once or twice a day... I think I sometimes get an associated "extra BM" after the mag pills so I've tried to time them cautiously (plus NUUN has some mag in it too, I think). I find the acidophilus to be compatible with where I'm at right now... and maybe a little helpful. I get the subjective sense that I'm less "reactive" to foods than I was before... but again other changes going on including being tied up in things and less "self-monitoring" going on. I saw Align for $30 at WalMart (maybe even cheaper than Costco) so I'll probably give a trial of that too. I hope I don't end up with the constipation too... sorry that happened to you futurehope... but perhaps with my magnesium that will balance out.

Head injuries are so fickle! It's nothing to mess around with, but I understand the frustration when sometimes things recover just fine and one tends to feel like they over-reacted. But even minor appearing injuries can go south rapidly... so please err on the side of safety as best you can. Also, I am curious if you or a doc have investigated the remote possibility of "hypopituitarism"... these can apparently vary greatly in extent as well as which hormones are effected, which means their symptoms can be elusive. One particular style is like a mild-addisions, which happens to result in symptoms virtually identical to POTS. I keep this in the back of my mind, as my POTS symptoms may have begun after one of my head injuries (fainting + various cognitive things). The pituitary & hypothalmus are a bit fragile (physically & toxin-wise) and in a way it would be "nice" to have a hypopituitarism identified because often they can be directly treated with steroid replacement (as opposed to the symptomatic treatment of POTS). Just a thought.

It's hard enough finding a doctor that knows about autonomic probs... I imagine finding a lawyer that does could be real trouble! I guess Scientology is out of the question too: http://www.cs.cmu.edu/~dst/Secrets/E-Meter/ Besides it's hard to be "clear" when you have brain-fog!

Good point. It seems like some research could be piggybacking on the H1N1 ongoing research/monitoring too... maybe hoping to find potential contributing factors, associated conditions or whatever might or might not be linked to post-viral stuff like POTS or ME... maybe eventually springing vague clues about prevention if it can be done. I have multiple points in time that I can speculate were the beginning of my POTS related symptoms, but two of them did involve extra bad or extra long lasting cold/flu illness... or another involves physical injury (preceded my first faint by half a year). Count me as a half-pots (or crack-pots) vote for "yes, it seems like an extra bad illness period was involved".

It's a possibility. I guess about 5-10% of people are abnormal metabolizers. If you see a pattern like that from the chart then it seems possible. Of course, allergy or some other sensitivity or interaction is always a posibility... I just mention this because it's fascinating to me and shocked me that it is not all that uncommon. Also, some drugs will then inhibit or promote whatever natural metabolic rate you have, or fight over a limited amount of enzyme activity... which can explain some drug interactions. Here's another chart... maybe it's the same info, I'm not sure: http://medicine.iupui.edu/clinpharm/ddis/ClinicalTable.asp I personally suspect that I am deficient because I am "immune" to codeine & vicodin, which require 2D6 activity to turn in to their working form! More commonly, the 2D6 is working to remove a drug from the system, though. A "slow metabolizer" might end up with a higher and longer lasting dose compared to a "normal". An "ultra rapid" metabolizer might get only brief benefit, then be left with just side-effect fallout. There is genetic testing (probably pricey but definitive) and there's clinical tests. I don't know how common testing for this is. In one case they give you a dose of DXM then measure it's level in your blood to see how fast you "metabolize" it. I think one of the anti-estrogen drugs is also used this way.