erik

Interesting. I hope they can collaborate and get something that works well overall.

Wow... great explanation. This could explain a proclivity for muscle tension headaches.

I just got warm in the nether-regions. The nurse warned me of this, but I said it was due to her, not the contrast solution. Guess that's how I diffuse stress... it is an ancient mind focusing technique passed down through the generations.

This is one of the key things for me. I've got beefy legs and I think without them I'd not be able to manage by moving around. I can usually stave off fainting by moving... using the "musculoskeletal pump". At my worst, it might not be enough, and I will usually still get exaggerated sympathetic stuff after more time but nonetheless it is critical.Some recommend resistance training to the lower body... and definitely activities that build up (and heavily activate) those muscles like brianala mentions might be especially helpful/doable. It might not be what you're wanting eventually, but resistance training might jump start and enable other activities. This great thorough overview article on Orthostatic Intolerance identifies the muscle pump as the primary defense against gravitational forces and mentions that it is "often likened to a second heart".

Oh man. Definitely gotta have the doc get a look and see what you're dealing with... good you have an appt. Hopefully it's just a garden variety sore throat acting up really badly, although that doesn't ease the misery of a nasty sore throat. They are the worst. They say strep is not so common and I think you need a culture to tell for sure... maybe same with viral culture for shingles if that seems like a possibility to the doc (and it would certainly be rare). That would tend to be treated with an antiviral if possible. Shingles is painful but generally benign, if that is any consolation on that remote possibility.

Response expanded & moved here.

Nitro is mentioned as one of the provocative drugs sometimes given during TTT. Anybody here happen to have had that done? Safety Sam says nitrates are "absolutely contraindicated" for use with PDE5 inhibitors (Viagra, et. al.)... so be sure not to combine! I'm sure you wouldn't anyway, but Safety Sam likes to say stuff like that! Seems like PDE5 selective inhibitors might miss the problem constriction zone for thankful (though perhaps in a fun way . Seems PDE6 is retina or something, PDE11 perhaps testes/prostate? Is there a PDE<x> out there matched to the region where thankful tends to overconstrict? Something else with that "selectivity" profile? This article... after lots of biochem details... surmises: Do other anti-anginal drugs manage this balance at this point... in their peripheral dilation effects?

The throat & tongue being asymmetrically sore seems extra fishy. I had a shingles rash ages ago and it was on just one side... thigh region. It's basically a re-emergence of the chickenpox virus. I've read it can emerge in places one wouldn't expect like the eye... wonder if it could hit tongue & throat??? I don't know if that's possible.

What, the Canadians think Fibromyalgia folks are hosers or something??? It's a pretty similar symptom cluster I think. Sure will be interesting to see what comes of this. Thank you for bringing it up. I don't suppose a retrovirus can trigger methylation, perhaps of a NET amplifier as well as a receptor population gene... and perhaps hinder the body's natural processes of reverse alchemical chelation as well? Just looking to tie up a few theories in a bow.

I've got a few quick thoughts... questions really... I always end up with more questions than answers: There is a chance of you having better pulse pressure. Meaning systolic dropping a little and diastolic dropping more. Heart looking less active, but in fact being more efficient (plus we're ignoring pulse). Ignoring the chest pain, did your subjective sense of feeling better happen to correlate with widening or narrowing here? One simple angle on this is that nitroglycerine is said to dilate veins more than arteries. Arteries pump out, veins return/drain. Physical pressure in vascular bed is not the only factor to permeability (it seems a great number of things influence that), but it might be one factor... permeability might feed pooling a bit. Regardless, the "load" on the heart is reduced by this... the presumption behind the relief it brings. BP should go down... and it doesn't necessarily mean less blood is getting out to the body. POTS seems characterized by "uneven perfusion" (not sure if that's validated but seems to be the case). If something is magically evening perfusion, a better overall outcome could result even with less total perfusion (again, less perfusion being a potentially false assumption of lower BP). How local needs are "assessed" seems pretty complicated... If the artery vs. vein ratio is actually important... I'd be curious to know more about it. Are nerves segregated (I'd guess not, but don't know); Is there a variance in the multitude of receptors that get multiplexed into a "constriction state"; Are the non-neuronal messengers distinguishing them and tuning neuronal response; Is an implicit distinction of a vein drawn simply from a natural change in it's contents, and this concentration used to modulate constriction response; etc. I assume I'm asking a very simple anatomy question... just enjoying pondering it before learning what's really going on!

Oops. Sorry. I got Toprol mixed up with Tramadol... which you mentioned as helping a lot, StacyRN. I meant to say that Tramadol is really intriguing with its profile and mild blend of many effects... not just a simple opioid. Seems like something dysautonomia docs could consider if they haven't already.

Sometimes I get an odd tightness in the middle thing that sounds similar to yours. Sort of tense up the abdomen as if bracing myself for something with each move... I'll even grimace, yet no pain, just an odd discomfort and defensiveness... holding myself in or something (responding to abdominal pooling or pressures perhaps???). I get single little baby coughs, like the lungs get a little mis-pressured. Can get a quick single cough right upon standing... or prone to little runs of them usually while staying upright. These sorts of things tend to come around along with my periods of worse orthostatic tolerance, and don't seem to be just lung issue, though I might get some luck with my albuterol inhaler sometimes. I happen to be getting this today, and lately... coming off meds and returning to my old self. The brake and gas feeling sounds familiar... gears grinding opposite directions. Seems like things could get that way easily enough with dysautonomia... stuff going misregulated this way and that... torturous dyscomboblia. Depending on it's severity it could be akin to akathisia. Diphenhydramine is apparently thrown at that. Ironically, I personally get a nasty angst from taking diphenhydramine and shy away from it as a result but it isn't known for that of course. Toprol Tramadol is really intriguing... it's profile seems like a mild blend of helpful things. I wonder if dysautonomia docs have or would consider it? Obviously meds need caution and folks react differently but breaking out of dysregulated state is a key concern (one could argue it's a loose cousin of Efexor which is already on some of their lists I think).

I get in in AM too... and I checked my blood sugar just like you! Was normal. Not sure what it is. An exaggerated reaction to something normally on the upswing as one wakes up... cortisol or whatever else? I don't know.

Yeah, some home measurements with the BP/Pulse meter should hopefully help. Not just in spotting POTS but to get more than just a pulse picture of the heart. I think a doc will (and should) almost always start with consideration & adjustment of existing meds to explain & address symptoms. One key with the Holter info is to consider if you had symptoms timed with something it spotted... I guess it sounds like you did with the morning bradycardia. I am assuming the doc was informed of the caffeine... if not, be sure to let them know, of course! Your list of existing diagnoses puts you in the POTS neighborhood in general... fibro, connective tissue, migraine, etc. Folks can have NCS & POTS diagnoses simultaneously... I think one article said 30% of POTS have NCS too, IIRC... or I might be mixing that with NMH or other... hard to keep them all straight! Might have expected some HR spikes through the day with POTS, but of course Toprol would tend to mute those. If POTS were added to the diagnostic mix, I suppose you still have to view the whole picture to be safe there... so it seems even more expertise is advised than normal. Overall caffeine and it's timing against Toprol could get a little funny especially because Toprol is cardio-selective. Keeping a general eye on BP in addition to just HR is wise. Caffeine during day might be helping, not suggesting a change in anything if that's what you normally do... just keeping an eye on BP and letting the cardio doc know what that side of things is up to, as well as HR.

You are a POTS of gold, Tachy. I'm lovin' it. While some may poo poo this "Bologna theory" I remain a fervent believer in this and most other bologna theories out there. It seems there are accusations of conspiracy or bias, since the researcher just happens to be from the University of Oro... but I find that to be a coincidence. Personally, I'm more suspicious Dr. Zamboni who just happened to come up with a vermicelli-thin theory promoting the even smoothing & resurfacing of the veins for MS... it's clearly just a ploy to recycle his grandpa's patent before it expires and sell the little zamboni devices to do the treatment... you would be amazed where nanotechnology is going nowadays! But I get a better vibe from your Dr. Bologna. I will trade my current woes for a life of sulfurous flatulence, if that's what it takes... and I hereby pledge to donate all my stool to charity. Sign me up! I'm ready to be an OG in this reverse all-chemical chill-nation thing! Just call me Stoolio. I'm not name dropping here or anything, but I happened to grow up with Dr. Mark Thespot who later came up with the novel imaging techniques. "It's a little known fact there Normy", that his first name is actually Xavier, though like G. Gordon Liddy he prefers to have his middle be more prominent for whatever reason. Never figured that out... just a strange guy I guess. BTW, is there a chance that Austin Power's nemesis Goldmember was actually just suffering this same condition... and "expressing" it differently? Like a different POTS subtype? Just curious.

I had some reduced appetite for a little while too... where I didn't feel the urge, but I didn't feel ill about eating either. Definitely do your best to keep intakes more toward your normal range... and consistent if at all possible. Hopefully something will be tolerable for you. TypewriterGirl: Bedazzle your BP Meter!!! That's hilarious. If I were the bedazzling type, I guess I'd bedazzle mine too.

So which did you choose??? Just kidding. Just kidding. Maybe if I come across a lounge some day I'll give it a shot too... always interesting when something unexpected pops up and helps a bit. Blessings to you and the fiance/wife.

Though I'm usually not prone to motion sickness, I've had bouts of a persistent swaying, out of balance, dizzyish sort... like a sensitivity gets provoked and lasts for a while every now and then, but goes away again.

I'm hoping to try them. I have the supine slow heart rate too, so it would be a low-dose day-only thing like firewatcher... cautiously done. On the surface, they are known for doing the exact opposite of what my body needs... but they can have paradoxical benefit for many! For me, there will be lots of give and take going on. I will probably want my baseline BP higher & more stable so that the BB has more leeway to potentially work rather than backfire. Extra blood volume helps me with that... so fludro should provide a more solid base from which a BB might or might not work... all in theory of course! An SNRI tends to elevate HR & BP so that could be a trick to get me in a range where the BB is less touchy... other things do that too, many short acting things... or pinning the minimum rate with pacemaker... who knows what else... Oh, the lengths we go to trying to accomplish what most bodies do automatically in a couple heart beats time. Ridiculous!!!

I've had mysterious very mild stuttering every now and then over the years but not regularly. Hmm..... Do feel tremulousness, mostly an inside or on-the-verge feeling but sometimes a little tremor becomes visible. I know an adrenaline surge is supposed to make you shaky but for some reason that doesn't often happen to me. I get the tremulousness lately upon waking in mornings or sometimes after exhaustion (post exhaustion makes most sense to me)... but weirdest of all I can get it right after downing a ton of water quickly (and I think I recall always shivering during saline IV's too).

I got knocked on my duff and completely pillywonkered for a few days about a week & a half in to first starting fludro. It passed and then became somewhat beneficial. Second time on it went smoothly and it seemed to help me even more. Never noticed a wirey side or sleep adjustment personally, just more "vital" overall and it shifted my BP up and more stable (so it falls less often, and when it does fall it stays above my pre-fainting zone). Can we say pillywonkered here? I just made it up to compete with the down-under and over-pond'ers. Hope I didn't randomly pick a bad word

The fludrocortisone & salt should start increasing your blood volume. Ibuprofen is said to do the same (I don't know to what extent), so it might already be doing so a bit. These three should work together on building blood volume which could be good. Adding & removing ibuprofen might make BP go up & down, it seemed to do so for me. Just keep an eye on blood pressure over time, which you should do regardless... and keep a doc appraised if it seems to go up too much. As for a chemical drug interaction thing, I don't know. It is very smart to ask, even about OTC stuff. I chat with pharmacists here and there... including about OTC items. When starting fludrocortisone it can help to ramp up the dose slowly. I got nasty headache, fatigue & moodiness for a few days then it magically passed and I managed to get some use out of it.

It seems very commonly recommended with CFS and similar regimes... or in a "mito cocktail" since it's low level mitochondrial food. When first I tried it I got deeply fatigued and muscle sore after about a week, like a reverse effect... but I tried again and it wasn't as bad and I went to daily. Maybe helps me battle fatigue somewhat now. I will see how much it's helping me after I run out of it! Pricey stuff usually.

I guess it could be either. I've had salt goof my tummy, and usually it's pretty hearty... ol' iron gut.

I tried Taurine for a bit. I love Monster drinks (usually the Lo-Carb) and seem to get less palpy and get a healthier/compatible feeling lift from them compared to other caffeine sources... so I hoped Taurine might be the magic ingredient for me. Didn't noticed too much... hard to tell... Maybe just feels like it works better to me when it costs an arm and a leg to buy... compared to plain old coffee!