erik

The two articles I've read that go into it a little might clarify (and correct, if necessary) that point. Here's a blurb from a Grubb article in '08 that singles out the sub-type... though of course getting a hold of an expert doc is the way to go: And here's one by Raj that mentions "Central Hyperadrenergic POTS" amongst many other insightful things: These two guys are a couple of the top dogs, especially with research but their teams also do good treatment AFAIK... of course Mayo Minnesooata (don't ya know) is top notch (and didn't they coin the latest term POTS???). I really don't know the "probability" of each treatment working based on a likely suspected sub-type of POTS. In a way, it can be better to acknowledge that one doesn't truly know the underlying pathology and just try different meds. However, as you note from reading those articles there can be extra emphasis placed on tamping down the adrenergic system with hyper-adrenergic form... whereas something like Clonodine might make me more Hypotensive & faint (which is what happens to me when I stand) and I would probably be helped with Midodrine to actually activate the adrenergic system (it is an adrenergic alpha-agonist)! Realistically, given delays and realities of getting treatment for POTS it might not be bad to give fludro a trial run even if it is looking like you are hyper-adrenergic... if that is where the doc is at so far in the process. It seems the one rule to this game is that every patient varies and meds can both bite and surprise you positively with their effect. Since my BP usually falls out on me with prolonged standing, I am assuming I am personally the non-hyper-adrenergic sort. However, I have had periods when my BP has held or gone up slightly (sometimes when on meds but sometimes even when not) so I'm wondering if a person can be a sub-type drifter of sorts too

If it's a fat lethargic cat I'd go with Egg Nog... if the cat is skinny and wired then Adderall Or go opposite, to be ironic if that makes ya laugh more! Mmmmmm.... Egg Nog, should be hitting stores soon!

He he. Yes, I figure with some docs even if you are NOT crazy when you go in to see them... you ARE by the time you leave! Perhaps a bit of a "self fulfilling diagnosis" thing can occur! Indeed, one should be wise & tactful in dealing with a doc. I like my current doc overall and think his being younger is probably a bit of a help. I also thank him when things work out (like latest fludro scrip)... I figure it can help that he knows he is not helpless in helping me, since that is a situation that can drive people & docs away. They don't want to be helpless so we can be frustrating patients at times. I consider it a simple personal/professional gesture too (emphasis on simple since a doctor-patient relationship has reason for distancing & abstraction). The next specialist I'm headed to (cardio, not neuropsych for reading/ADHD stuff yet) happened to teach my general practitioner not long ago, so if the teacher comes up with some good info or a plan for me I figure the arrangement could be good! At this point, I could probably drop the "obtuse" line on my GP as a joke (maybe needing explanation if he isn't a fan of the movie) and not damage things... with others I think it would only be an option if you're planning on saying goodbye anyway With how fast doctors visits tend to be now-a-days, I often don't even know what happened until I'm on my way home afterward and playing it back in my head. They end up being like either a 10 minute barrage or 10 minutes wasted very easily. Makes me worry how easy a doctor could get the wrong read on a patient when under such a rush. Thankfully, they haven't carted me away just yet I did refuse to sign the "pre-consent to treatment" form on a shrink visit once... that might have saved my medical posterior once

Oh that is great. Always good when the complications that plague many of us DON'T enter the picture. Quite a relief. Glad the tumor isn't making a problem of itself. From some reading on the subject (I've had a head injury too and have fixated on my pituitary & hypothalmus more than the average fellow) apparently the damage or tumor things that are sometimes discovered often end up being quite benign. Glad it's not pressing on anything.

I had a few months of significant swaying & drunk feeling a couple years back... on top of my more typical vague dizziness. At the time my vitals were also eluding docs (low pulse & bp) and I was just generally sick but not from a clear cause. There were also longer periods of milder "drunk" feelings. I wondered if a liver toxin "clearance" could have been creeping up, but over the years my liver has tested strong. I took antibiotics for a while, since I'd been in a known leptospirosis area... I took doxycycline. Either time or the doxy or whatever did get it to pass. Some other folks here take antibiotics either for known Lyme disease, suspected Lyme or similar infection, or just general benefit (anti-biotics can have other properties such as anti-inflamatory & neuro-protective effects). Sometimes, infections "settle" in places and can be behind disturbances like dizziness. If other things don't show up to give a clearer cause... this might be something to consider down the road. Aside from that major period of this symptom, I do have bouts of staggering and such... enough that friends I was with joked about me being drunk (despite being the one of us that hadn't drank). I do think it can come by itself just from POTS alone... but I'd recommend not assuming this especially if it is persistent.

Valhalla is mentioned in research a bit... do they happen to have practicing docs? Looking at the NDRF listing and such, I'm wondering if they're pediatric specialists. Not sure. Anybody know or dealt with them? New York Medical College Valhalla, New York I do like the name... perhaps that's where the bravest dysautonomiacs go when we die (for autopsy at least ?!?

It probably still has a good chance of helping by over-hydrating... especially if you are the Orthostatic Hypotension type (BP falls upon standing). I've even read that fludrocortisone does more than just the salt/water retention trick (mimicking aldosterone)... one article I read mentioned that it helps also by potentiating vasoconstrictive response (although volume increase is certainly it's main deal). At typical dose it's a mild glucocorticoid (but not reaching adrenal suppression levels until .4mg/400mcg). Also, most measurements (other than clever stuff like HgA1c) are just a snapshot so despite being a contradiction one can choose to look at the larger "clinical picture" rather than a single measure. The notion of "normal blood volume" is just a statistical thing across a population... if that "normal level" isn't cutting it for you it doesn't matter much that you happen to fall near a statistical mean! What matters is what it takes for your body to function better. One last note, despite the fact that a doc can & should try to inform a decision as best they can with real facts and sound theories... people still don't fully know what is going on in the body to cause these problems and treatment is still basically just semi-informed "trial & error" and used to address symptoms rather than discernible underlying causes. If you have been authoritatively found to be Hyperadrenergic-POTS (and you have confidence in that classification to begin with)... there might be argument for not trying Florinef or not trying it first since it's reported to be less helpful in that situation... but generally it's one of the first things tried and also one of the more "conventional" and known entities out there. And I believe it's officially "approved" for OH/OI, so a doc has easy time explaining a scrip for it if you've got that indication before reaching to "off label" medicines.

I've had periods of time where I got this response especially. For whatever reason, I've been pretty free of it lately. I don't use it very often, but I've got an albuterol inhaler that I was prescribed after a lung function test demonstrated some compromised lung capacity (and my experience somewhat fit exercise induced asthma). As others on here can also indicate, sometimes the asthma isn't really asthma but regardless the inhaler has been helpful at times. I also get the sense that something is going on chemically that induces this "air hunger" at times. But since it is so pervasive for you I would generally recommend consulting a doc about it, even if it ends up just being another POTS thing.

Only Hookah experience I have was when a buddy brought one back from Afghanistan a few years back and a bunch of us tried different flavored tobaccos... however "treatment" was combined with copious beer, band & conversation. No idea if it had any effect POTS-wise, but it gave great flavor & no harsh effect, made cool smoke and was socially fun! I think apple was the consensus favorite. Anyway, whether or not it ends up being a viable long term practice, I'd look closely at what might be in the stuff that might be helping. It could be a clue to other treatment possibilities that might be just as helpful with less potential risk. Who knows, maybe a tea made from the stuff would work too? Hard to say what risks are.

I think there is a liquid version medically available if that would help or be worth a try.

Compensation is key for sure. No, not the over-sized truck that I have... but making up for inability to learn in one way by extra effort (& ample faking it) elsewhere. I can be a good sponge (and chameleon) at times which works well for some stuff. It's like all the little things one does or avoids because of POTS symptoms without even thinking of it... or before knowing you have it. I'll try to pick up a copy of Overcoming Dyslexia... and have someone read it to me Just kidding, I can manage, it just takes a normally prohibitive level of time & effort. Miss Tachy, I have certainly had with my share of "external cognitive disorders"! My medical term is "Reverse Conversion Conflatulance"... where docs conflate key facts and project their inadequacies upon the patient's physical symptoms. Sometimes it has been a condition of a rather persistent nature... they are disheartening and served to deflate my fledgeling confidence. Now I've overcome them mostly through a keenly honed & cautiously apportioned negative attitude! I tend to not give a "hoot" like I used to. Like most, the "hoot" get's kind of kicked out of you over the years and replaced with a big Valley Girl style "What...Ev...er". I'm a bad example on that front, since I've given up on more than I've overcome over the years. Oh yeah... one of my favorite quotes ever is from Shawshank Redemption: (A frustrated Andy to the Warden) "How can you be so obtuse?!?!" Drop that one on the next doc who "conveniently" just doesn't get the point! And then there is this interpretation: http://www.movieweb.com/video/HU2l3726o2sA45 Funny, I happened to spot a neuropsychologist office just yesterday on my way to pharmacy to arrange a short trial of NuVigil (should be giving it a shot in a couple days). I may have to have a chat with them to see if there might be something I can do. I was intrigued by some of the things other mentioned elsewhere (I think on this board) about some visual "tricks" that change the look of a page and end up helping some folks. Seems like that could sort of help. Otherwise, air-conditioning is one of my pre-reqs... if it's remotely warm I can't concentrate at all! I think ADD is a possibility for me, and there was that Vandy study that found it to be more prevalent in POTSies. A while back I looked in to lots of similar things and found SCT (Sluggish Cognitive Tempo) which is now called ADD-PI or ADHD-PI (Primarily Inattentive) to be a decent match. In my approximation it's like ADHD without the impulsiveness (at least not outwardly)... internally my mind has it's constant distractions. I do have a couple modes I can be in... thoroughly tired and unable to focus or accomplish anything as a result... vs. an active mode that involves being actively distracted! It is possible that an alerting drug can help with both that and give generalized "pressor" effect and help with my upright circulation... if armodafinil does anything for me I'll probably end up asking about cheaper old-school options. When I read up on head injury stuff, it really rang a bell... there can be diffuse injury that doesn't have specific failure but kind of slows overall processes down and while things don't become impossible or overtly disturbed they take vastly more "internal" effort. In short, one ends up with mental fatigability. This kind of fits my pattern of needing to take a break like every 10 minutes when trying to read stuff that takes concentration... I get drained but I can rest and go at it again pretty quickly. I can imagine POTS stuff could do that sort of thing too, so I might have compounding minor problems adding up into something significant.

The Gut Is Said to Have A Mind of Its Own http://pn.psychiatryonline.org/cgi/content/full/36/14/16

It seems plausible. A drug like Paxil relies on attaining a "steady state" at a certain level. Even frequent intermittent interruption seems like it could disrupt that and shift the resulting "steady" level lower. I don't suppose you happen to be having any symptoms associated with withdrawal, are you? That might be a clue that plasma levels are dropping out on you. It wouldn't be so meaningful without a prior "reference value" back when it was working well for you, but would a doc be able/willing to measure the "plasma value level" of paroxetine? It is a different topic, but I have a personal fascination/fixation on the Cytochrome P450 stuff that is so key to drug metabolism. If something were going on that tampered with that, it could also mess with the body's ability to attain "steady state". In the case of Paroxetine, it is apparently cleared by the 2D6 enzyme... and is also a potent inhibitor of 2D6. If something increased the activity of 2D6 it could also account for lower paroxetine levels overall. There aren't too many documented substances that do that though, just dexamethasone & rifampin according to one P450 reference chart.

BTW, in the genera of OTC meds, and only slightly off topic, NSAIDS such as Ibuprofen are also capable of helping to increase blood volume (and stave of BP problems like Orthostatic Hypotension) similar to fludrocortisone. I don't hear it mentioned much, but it's on some of the POTS med lists. My recent phase of overly high BP might have been from compounding effect of fludro/salt and also consistent Ibuprofen (which I was temporarily taking for some soreness). I don't think one or two here and there are expected to do too much, but consistent use seems to promote blood volume. Also, licorice (licorice root) is said to be beri beri similar in effect to fludrocortisone. He he, sneaked in the name of a super-fatigue disease there, how clever Could keep that in mind just in case fludro doesn't pan out. One last note from Mr. Babbel here, as with many meds there can be some adjustment phase when starting it. I got ultra tired and moody for a few days, and had consistent headache for a bit, when starting fludro the first time... but it passed and stabilized to be beneficial. Keep your doc appraised of your reaction and have them help determine whether something is significant enough to stop or worth putting up with in case it will pass. Probably keep an eye on BP in the rare event that it goes up a bit too much (probably not too likely especially if you're typically low). Consider tapering the dosage up slowly if you seem sensitive to it or other stuff in general, though some people just jump in without a problem.

We might be the missing 4th children of the Brady(cardia) Bunch???

I've had periods of time when I'd cough spontaneously with changes in position, especially getting up. Wasn't sick, didn't have phlegm or anything to cough up, no known irritant... felt more like a pulmonary pressure wierdness. It hasn't happened recently. I don't think I had nausea at the same time... though I've had periods of mild nausea too.

I've had eye jitters after reading fatigue. Vibrating left/right. But it's not frequent for me so I figure it's not a generalized nystagmus. I haven't noticed a discrepancy between pupil sizes. When I worked at a school, sometimes the students would appear to be getting disproportionately larger over time... that's probably just normal growth spurts or whatever

I'm like potsgirl on this. I have long runs of never getting sick... then periods where I'm constantly sick (lingering or non-healing or reinfected?). It's kind of like my NetFlix cycles... I'll sign up, go crazy compulsively renting everything (even the lamest of flix), then cancel for a couple years, then repeat the cycle. Maybe I'm gettin' some movie borne viriiuses???

I get dry eyes. I haven't noticed it being only upright or worse upright, although I do have POTS. I too am usually laying or sitting/laying except for during activities/exercise and dryness continues even supine. I'm on Evoxac now... which mostly increases salivation but might help the eyes (tear glands) a little bit too. I love the extra saliva (probably sounds strange/gross but it's true)... mouth feels much healthier. I may end up taking Restasis or whatever can help the eyes more directly. If stuff shuts down too much, infections can creep in (beyond just the "discomfort" factor). Something strange I only learned recently when reading about this stuff is that there are glands in the cheek & lip. I had no idea! I have had weird but mild swelling & tenderness in those spots for so long and was just confused by it (thinking it was just basic flesh). Perhaps I've had minor infection/inflammation going on related to my lack of tears & clearance from those ducts!?!? I'm not surprised to hear that dry eyes is reported with POTS. Keep in mind also that Sjogren's or Lupus or similar can cause POTS (autoimmune attack/neuropathy) and take "long time" to diagnose. Even though evidence might not be there, one can keep that on the back burner as a possibility. If either of those conditions were progressing, one would want to identify & halt them sooner rather than later as best one can. I believe a rheumatologist is the route for investigating those. Either way, get the symptoms on the record so any potential emerging pattern is documented. I don't know what would explain timing the dryness with being upright. It is in the autonomic nervous system realm so some sensical or nonsensical interaction isn't entirely surprising. The glands are triggered by muscarinic receptors of acetylcholine (for example, Evoxac is an M3 selective muscarinic agonist). Perhaps some competition for the neurotransmitter supply is going on... or some regulatory shift changes thresholds on triggering things... or if you body goes in to "fight/flight mode" it might make perfect sense to shut down less essential processes???

Just want to double emphasize that there are no hard rules to this stuff. That list is also partial... there are meds not listed that some people try... it's just the only one I've personally found so far that categorizes med by POTS variants and is from one of the leaders in the field (Dr. Grubb). I am sure even Dr. Grubb would emphasize that there are no hard rules to treatment, that one still ends up with "trial & error" and setbacks and surprises. Also, be sure to consider key articles by other key medical/research figures, such as Raj: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ If you are in a mood to digest lots of information, here is a post where an individual consolidated their view of treatments: Treating Your POTS: The Typical Medication Protocol http://te-in.facebook.com/topic.php?uid=22...&topic=4334

I don't know what the protocol of the study was. If they were trying to mimic/stimulate one observed physiological BCAA pattern, then they might have been given in isolation. Or perhaps they were given in high dose just augmenting normal diet (meaning including other amino acids)? One consideration is that they might have been trying to suppress the fatigue signal. Some people argue that fatigue can be a protective mechanism. In other words, assuming it is an invalid signal and suppressing/overcoming it without addressing it's underlying cause could lead to damage. Who knows, perhaps the reason orthostatic intolerance is so commonly associated with CFS has to do with the inevitable pushing through of fatigue... a resultant rather than causal relationship. Either is speculation at this point... though obviously an expert can make a less "blind" speculation than I! Anyway, I've found info indicating that the BCAA's are involved in signaling the fatigue. I would be curious to know if the study indicated more than this... did it indicate BCAA as underlying cause that could be corrected for some folks? Or was the success more like allowing patients to overcome the fatigue... perhaps to their detriment (like if they just used a stimulant or something)? That could be an important distinction for how much promise this holds to CFS treatment.

Hope Dr. Dirty goes away for a long time. That is almost too cute a name... Maybe Mr. Sicko or something... I assume he'll lose his license too. I can see why there could be some underlying trust issues. I wish you the best in recovering from that horrible incident.

I've been on Florinef (fludrocortisone) twice now. First time it seemed to help a little... then off it for testing which got delayed... then back on it. Second time on it I (and now off it again I noticed quite clearly how much it helped me (except my BP was getting a little too high, but one can just adjust for that and it won't happen to everyone). It's "first line" for POTS as well as more widely known conditions like Orthostatic Hypotension. It is one of the very few drugs that are actually approved for treating our conditions! Most are prescribed "off label", as they say! Sudafed (pseudoeffedrine) triggers norepinephrine release/activity which is a potent vasoconstrictor. I use it occasionally both by itself and as part of Claritin-D & Zyrtec-D and I personally note both some limited benefit and also increased tendency to palpitation. I call it my "poor man's midodrine" because midodrine is an alpha-agonist causing vasoconstriction that is also often tried for POTS... but is very expensive. If I'm having to be upright for a while (like with a recent work opportunity), I consider a little pseudoeffedrine to help... it can backfire though so one needs to get a feel for it. For example, if you are the sort that gets agitated from being upright and standing still (I get this horribly at times)... sometimes it can help to keep the body from inducing it's panic-like response to being upright... but if it doesn't manage to stave it off it can just as well aggravate it and put you even more on edge. I've mostly had luck with it (fludrocortisone + pseudoeffedrine) but I use the latter sparingly. BTW, phenylephrine, the replacement for pseudoeffedrine in the non-restricted OTC Claritin & Zyrtec is also a vasoconstrictor. Our sensitivities will vary so one might just have to cautiously give these things a try and see, unfortunately. I even get away with adding a little coffee to the mix... whereas others would have their heart flip out completely from this! It is probably wise to add one drug to the regime at a time, too.

This article has a paragraph or two distinguishing H-POTS as well as distinction in Table 2 listing which subset various meds tend to help with. It's just a starting point. There are few or no hard rules to this. Generally one has to hunt through treatments until one hopefully finds a balance between benefit and side effect. Different docs can have different approaches, information can change, and patients can respond in various ways, even paradoxically. Postural Tachycardia Syndrome (Blair P. Grubb, MD) 2008: http://circ.ahajournals.org/cgi/content/full/117/21/2814 "Table 2. Therapeutic Options in POTS" with meds broken down by subtype, "H" being Hyperadrenergic: http://circ.ahajournals.org/cgi/content/fu...2814/TBL2189801

Since Vandy does so much research perhaps there is possibility of squeaking in as a research subject and saving some dough??? I have not been through that process and don't know how many folks they take on, but some of the studies essentially include an extensive work-up in them. Anybody know if the Vandy researchers even blend research with treatment... or do they just take their measurements and keep results private (from a research volunteer)?