erik

I won't be in the chat due to time differences but if someone else is perhaps asking about the ancillary symptoms of POTS & other dysautonomias could be helpful. I'm not sure how to word it, but it seems that even if one is successful at keeping BP up and blocking tachycardia, other symptoms tend to persist regardless (fatigue, brain fog, digestive, et. al.). Is there any "unifying theory" to explain this... or a potential alternate "underlying" cause beyond the known autonomic problems? If not, what are best symptomatic treatments for the common ancillary symptoms (and what ARE the leading ancillary symptoms)? Just a thought if someone else is on there and there is extra time. I look forward to reading the transcript. Thank you worththewords for notifying us of this.

That sounds miserable. If such severe symptoms, especially when laying down is far from ordinary for you, I think I'd play it safe and see if a doc can help. At the very least, do you have somebody with you to assist with care & transportation? Of course, I guess the "stay hydrated" message goes two-fold with a flu with POTS. Are you getting any relief from anything, laying in different positions, reclining rather than laying flat, I don't know what else?

This site is a bit of information overload, but it's an interesting look at parathyroid issues in case this matches anyone: http://parathyroid.com/parathyroid-symptoms.htm

Oh yeah... like others mention, I also had grey-outs and chronic lightheadedness for so many years (since a kid). I wondered how everyone else just did their thing and never seemed bothered by this stuff... I figured I was a wimp in this regard or something. I didn't realize other people DON'T have to deal with this stuff all the time. Another bizarre thing is my difficulty reading. I don't know if it's POTS, head injury, psychosomatic or whatever. I have to pause frequently to rest (mental fatigue), I get overwhelming emotional feelings, eventually my eyes will begin to jitter, and generally I have a weird phobia about reading though I try every now and then over the years to see if I am magically cured. Just completed my first book in 20 years (since dropping from college)... reading a book was a personally traumatic experience (internally, not like a real life trauma or anything) but I did it. I can absorb things in other ways, just not traditional reading. I don't know how much is attributable to POTS, like blood flow problem, how much was from head injury, how much might be some learning disability predating POTS (I had difficulty & headaches from reading as a child, but was put in a speedreading course as a response for some reason). I wouldn't be surprised if some of it has to do directly with POTS issues... especially because I managed to make it through that book by keeping the A/C blasting, overhydrating, etc.

I considered it quirky that for years I was adamant about sleeping in my lazee-boy... not knowing why but knowing firmly that I felt "magically" somewhat better doing so. Beyond that, I suffered a weird anxiety sleeping in my bed. I wondered if I had one of those psychological things where you "need" to have the TV on or something (my lazee-boy was in front of the TV as many are). Turns out in POTS sleeping with head elevated is recommended as it can help with some things. Within the POTS world I think I have a quirky case in that I get more frequent "sudden momentary panic/agony" rushes when sleeping flat. I figure my heart rate or BP might be dropping too low (I do have measured bradycardia) and my body issues a panic order to counter it (like can happen with apnea... or perhaps I have a bit of central apnea thrown in). I think the elevated head is typically supposed to help in a rather indirect way (blood volume or something)... but for me it seems to have more immediate benefit.

From what I've read, some deficiencies can result in a neuropathy that doesn't recover fully even once the deficiency is corrected. However, further damage might be averted or some slow recover might come over time. I've read thiamine can do that in beri beri (sometimes function comes back, sometimes not). Other things like B12, D, calcium deficiencies might be similar, not sure. Even this doesn't "prove" anything as a cause, but it can explain a circumstance where it could be a cause yet subsequent supplementation fails to correct symptoms at all (the nerves are reluctant to re-grow/re-activate).

I can intuitively buy in to the "shifting blood flow" thesis. Seems possible to me. Perhaps an fMRI project has/will looked at this, particularly after injuries. I had a head injury and a lot of subtle and not so subtle things changed after that day.

Wow... that's enough to ulcerate your wallet! The stuff is pretty expensive. Is there a less expensive hi-potency form or something?

I get a deep total soreness at times, Lina. Have had this flair up occasionally but briefly for a great many years, though I'm often quite un-sore at other times. For me it's a flu-like feeling that eventually get's painful in muscles (but no other signs of flu or infection). I've heard flu-like stuff is typical of CFS which also has crossover with POTS. I've considered a Fibromyalgia point of view too, but for me it's just deep muscular and I don't have the characteristic "pressure point" sensitivities of Fibro... but that could fit too.

Greetings! I'm sure you'll find this forum a pleasant and informative resource. That is lousy to have potentially helpful meds blocked by other condition or circumstance. I hope that you can hone in on some helpful treatments. People here often have handy workarounds or can at least relate to the various dilemmas involved. That sounds like an awesome doggie! Sometimes supportive spouses eventually sign up and participate in the forum too... perhaps some day your dog will join us???

101 Doctors! That kills me! I have long believed that there is something similar to the Rainbow Bridge for any loving doctors that happen to pass before we do??? I think the poem goes something like this: Just this side of heaven is a place called Rainbow Bridge. When a doctor dies that has been especially close to someone here, that doc goes to Rainbow Bridge. There are stethoscopes and sphygmomanometers for all of our special friends so they can mock and fail to diagnose each other. There is plenty of food, water and benzodiazapines, and our friends are warm and comfortable but a little groggy. All the docs who had been ill and old and dense and insensitive are restored to health and former diagnostic "skill". Those who were hurt or maimed are made whole and strong again, just as we remember them in our hypnogogic & lucid dreams of days and times gone by. The docs are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind. Their beloved POTS patient. They all cold-pressor test and sigmoidoscope each other, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body presents essential tremor. Suddenly he begins to run from the mainstream medicine group, flying over the green grass, his legs carrying him faster and faster. You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy investigational prescriptions rain upon you; your heart again beats at 180 bpm upon standing, and you look once more into the trusting eyes of your doc, so long gone from your life but never absent from your tachycardic heart. Then you cross Rainbow Bridge together.... and your doc "mysteriously slips" over the edge into the chasm below. Author pleads the 5th...

Hmm... Ignoring quality sounds fun. Do you have to share the result with other people???

I've had this feeling bleed into daytime on occasion. I should have been freaked out but I live in a "detached" realm on a regular basis anyway so I just go with it and try not to embarrass myself by doing anything odd in public. I do think it is more likely with a sleep disorder, and a sleep disorder is more likely with a dysautonomia.

I'm sorry for you're having to go through this hardship. I just hope it can become the beginning of better things for you in the not so distant future.

I had same negative reaction as Alicia so far as I can tell. I'll be trying again to see if the problem repeats... to confirm my impression. I got a very deep tired and sore feeling (opposite of what I was hoping for!) though I did rebound well and quickly afterward. Happened to be timed with feeling better mentally for some reason. Will be interesting to see if this repeats when I try it again. I believe it supports some low level metabolic functions (cell level energy transport or facilitation)... the "Mito First" Handbook states it's treatment purpose as: "provide energy beyond enzyme defect site, antioxidant". It is listed as a potentially helpful thing to try for "mito" disorders and such... probably for CFS too. I think it is worth researching & trying.

Yeah. I go through phases where my body decides to dump water. Not sure what the key triggers are. At some point, drinking too much can itself cause this... though of course there is something going on to begin with underlying everything. I've wondered if the body is trying to purge something, or if it can be a histamine/kinin sort of response too... or my wildest idea is "shingles of the kidney" That wild theory is that a chicken-pox/shingles virus goes dormant but has "jumped" nerves up in a nerve bundle somewhere (remember shingles is identified by the fact that it emerges in one nerve's "sector" of the body)... so then it emerges someplace different (even "invisible")! Crazy, I know... but I like fun theories. I've worried over this urination issue while job seeking (trying to resume work now after 2+ year hiatus)... plus my use of pee bottles at night (being male can have it's advantages) may not be very attractive to someone else if I manage to find a mate some day! I've analyzed this situation and concluded that I need to be a top level executive who got their job by nepotism rather than merit... the kind that has a chauffeur to work, gets to sit all day, doesn't really have any stress/responsibilities (those are very bad for my POTS), and has a bathroom & shower attached to their perfectly air conditioned executive office (I sweat a bit if upright for too long)... plus I need to have enough money & clout that a future mate can overlook my laying around a lot and the peeing in bed thing ("Sure he's gross and lazy but he's filthy rich so I love him anyway" I am working on my resume (& dating service profiles) now... please wish me luck

I can imagine if the immune system is expecting to always be doing *something*, it could end up being overzealous when there isn't an active invader ("idle hands" theory). Not too crazy a thought. I guess the treatments are simple and trustable enough that it is reasonably safe. Some things I guess you take a pill for a few days and then the thing makes a graceful exit. There was a show on TV lately where this parasitologist guy goes and get's himself infected on purpose, I forgot the name... he ate some raw infected meats, swam in the Ganges, etc. The best scene was when he had to stop the tour bus, ran to the bushes, then came back with a hefty tape worm "specimen" rinsed with some bottled water! Lovely. For those grossed by worms, perhaps this could be a future "nanotech" approach as well... assuming the theory has merit. One could consume a steady stream of otherwise harmless nano-critters to draw the immune system's ire.

I'm sorry to hear that Jana. I will keep you both in my thoughts and certainly wish you the best.

Sign me up! I would not pass up a moon excursion with Kathy Ireland! I've been practicing my "moon walking" and other zero-G dance moves so I should be flight ready.

My sister seems hung up on "anxiety" or "stress" even though I'm not an anxious person (though she sometimes is . She hasn't made an outright denial of my POTS symptoms, but doesn't seem to buy into it. She and others are "invested" in other opinions since that's where they stood since I was a kid. Changing their minds now would entail realizing they've hurt me for 20+ years... I think they have understandable psychological barriers to that, as would anyone. I like Tearose's list! People will seem to come up with an explanation that satisfies them fully within about 2 seconds. And if you don't go along with their theory then of course that means you deserve what you get. I am sure we all wish it were so simple. The full implication of "bodily functions beyond conscious control" seems to escape many... although since stress can exacerbate symptoms some confusion is understandable, but not obstinance in the face of explanation.

I voted "I take Florinef, but I'm not sure it's really doing anything" although technically I'm not taking it at the moment! I am cleaning up for testing purposes, but will most likely resume it later. It seemed to have modest benefit and I'll be trying again at higher dose if I can tolerate it. I took 100mcg (.1mg) before and tapered it up by halves over about a week or so. I did get moody and had persistent headache for half a week while acclimating to it, but that passed and then it had modest benefit (was able to cut water intake a little but keep hydrated and might have had a bit more endourance... hard to say). Wasn't a miracle pill for me but I think it helps some.

I don't have experience in those meds but Ondansetron might be one to add to the list. I made personal note of it because it is said to tamp down on vagus nerve activity (which may relate to some autonomic problems)... but I guess it's certainly an anti-emetic and has other uses noted: http://en.wikipedia.org/wiki/Ondansetron

I'm usually in 120 to 140 systolic range supine but often drops when standing (to 100-110's or well lower if bad) but not always. My statistical average is 130/81 for the last year (over 900 readings). Sampling is skewed by drops but also by plenty of "supine" measures so it's probably about the same as if I did it sitting (proper for general health BP). Avg for last couple months is 128/82 and pulse in 80's so I guess I'm just an average healthy guy... he he he I'm tall male with a solid build and "big boned"... basically opposite body type I intentionally target a mild hypertension (around 140 systolic) with salt/water diet (and formerly with fludrocortisone) since I get lightheaded even just getting down near BP's of 100 and start blacking or whiting out while passing through the 80's or even low 90's. So I aim high such that my dips are less symptomatic. I can also feel faint when BP is well higher so I do believe there are brain blood flow issues in play for me. The couple time's I've fainted fully were long before monitoring or being aware of this stuff.

That's helpful to know. Thank you.

There are some at clinicaltrials.gov but are for mostly for special conditions and the more generic one is indeed overseas (Germany), perhaps they all are: http://clinicaltrials.gov/ct2/results?term=Ivabradine