erik

I was a bigun' but dropped in gestational norm. Had some ear infection stuff semi-early in life. Penicillin is a taste I cannot forget.

Sweeeeeet! Good to hear.

Funny that you mention benadryl! I've been trying Benadryl myself just recently (though had prior used Tylenol PM and such)... and have really disturbed sleep with it. Might be a rebound effect (when it wears off) or maybe the thing itself. Had hoped for a mild sedative effect but it backfired.

Sorry for late response. For a totally dead muscle fatigue feeling like you describe... I would ask a doc if it could be an intermittent (or borderline) acetylcholine thing. Like a myasthenia gravis sort of deal. I know some take Mestinon for POTS, which one could think of as an "SSRI" for acetylcholine rather than seritonin. Found mention of it in a few places: DI Net: What Helps page A 2005 discussion here Over on medhelp It is in some research trials as well. I think my doc was considering this for me at one point... I don't know the ups & downs of it... all meds have complications, of course. I'd hate to recommend something that ended up not working well, but it might be worth considering & maybe resurrecting a discussion of that med on this forum?

Sorry for the late post. I finally realized that when working I always struggled with being productive (or even stay awake) during the day, then I would most always stay late (feeling guilty) and be quite productive in the evening... that was a pattern for decades. Temperature was a partial factor... removal of distractions when others went home was a partial factor... but I am convinced the time of day was significant. It was like my mind finally got freed to work in the evening... whereas earlier in the day extra efforts to focus were just extra fatiguing (or over stimulation with coffee meant distracted thinking... also unproductive).

In line with what firewatcher said about the hypothalmus... I have only felt "thirst" a couple times in the last several years. Neither of those times was I neglecting water (usually the opposite)... I think in my case it was a salt-craving impulse that was blurred (I was probably having too much plain water and not keeping electrolytes steady). I never get thirst partly because I always drink water, but even if I don't I will notice a severely dry mouth but don't get actual "thirst" impulse. I had a head injury so hypothalmus/pituitary injury is a possibility... or just electrolyte (and personal) derangement And I'll give Mellissa a "Chicken High Five"...

I can't be a big help but will say that I have phases like that myself! Mine probably relate to exercise or perhaps overall stress too. I have had outright "myoclonic jerks" which are little seizures (usually considered quite benign). At worst, there is a frightening very brief "panic" too. Probably an extended "hypersensitive" state, just as you describe. For me, exercise & stress are partial triggers but not the whole picture... there are times I can exercise and have uninterrupted sleep (even enhanced by being extra tired)... there are times that exercise seems to backfire. Not sure of a fix. Some say to avoid exertion too late in the day... might be worth doing when possible... but I usually wait until "cool time" to exercise (which means evening).

Had that response on occasion. Usually get mild appetite suppression after exercise, but have been times a really deep hunger comes instead. My body response is pretty unreliable! Often pushed to deep calorie deficit (couple thousand kcals in the red) in the past and rarely triggered "hunger", just eventual deep fatigue (can be explained if alternate energy is being properly maintained and if a "stress response" is triggered to postpone hunger in lieu of more pressing challenges). Some varied responses are not uncommon for otherwise healthy exercisers. It seems much has to do with the "metabolic state" the body is in before and during exercise... and much of exercise physiology focuses on manipulating that state pre, during & post exercise (especially for fat loss). Potsgirl is right on target about pre exercise feeding (of appropriate nutrients)... that is suggested to avoid a "rebound" hunger and instead go for a "steady burn"! In the spirit of your "Apart from an increase in POTS symptoms" premise... I will say that I often embrace the natural swings that the body has because they often do serve a purpose (for example, crudely speaking, insulin "pumps" energy & nutrients back in to healing muscles). The extent one can and should do this will vary. I mention it because it seems like hunger can get triggered from "specific shortages" as well as overall simple "energy/glucose" levels. I don't know the details, but I get that sense... for what it's worth.

I'm not an expert (or MD) but I did stay at a holiday inn last night And also took fludro for a while. My understanding is that going up or down by .05mg (half-pill usually) should be fine at pretty much any time (anybody, please correct me if I am mistaken). In general they will counsel you to "try your best" to hold at a dose even if getting some side-effects to give the body a chance to adjust... in the hopes that the side-effects subside before too long and the benefit remains or becomes evident. But I don't think there's any concern over going up or down by a small amount. Of course, going up by .05mg several days in a row, would be a no-no! You'd stretch out an increase like that over weeks, I suppose. I personally chose to do about 4 or 5 days at .05mg, then most of time at .1mg (target dose) and even threw in a couple 3 or 4 day stretches of .15 or .2 to see if I tolerated them. When I ran out I split the pills such that I'd have a little over a week at .05mg at the end. My doc didn't worry much about it (not sure he even said anything), I just "ramped" the dose myself to be extra cautious. Physiologically, I believe they say that adrenal function isn't impeded until at least .4mg doses (meaning you don't start inducing "adrenal fatigue"). Of course, that is separate issue from sensitivities and side-effects which are a judgment call for the patient.

I'm not a migraine expert but I've been around a few! One gets prophylactic relief from Depakote. If other things don't pan out, might be worth consideration.

"thankful", I think your notion of an "advocate" is really important. This stuff wears down an already tired patient... it's easy to give up or compromise on so many things, and that is a shame. One other angle, I have an HSA (health savings account) where I can deal straight with a doc, somewhat restoring the old direct doc-patient relationship. For example, one of my docs had to stop taking a particular insurance company because he would do full checkups and sometimes get paid $0.23 for the deal... he loved seeing me because I pay him directly (out of my HSA account) and he gets to feel like a doctor again (rather than just an underpaid plan administrator following rote procedures). When confined to normal health plan rules, a doctor who might get excited to see a "mystery disease" ends up being frustrated at how little doctoring they get to do nowadays... so we end up being very frustrating patients for them. Building the direct doctor-patient relationship can help a lot with that.

The old adage "Expect the best, plan for the worst" seems to apply. A doc can become an impediment and a patient needs to be ready for that. At the same time, a patient should approach with some optimistic attitude and openness to the doc, since that can help recruit positive participation from your PCP. I think that a PCP can most realistically be expected to: a) measure & document medical signs of orthostatic intolerance (supine/sitting/standing bp & hr measures) counsel the patient on blood volume/hydration techniques, anxiety avoidance & relief, diet tricks... ideally they would have some "literature" in regards to orthostatic issues (though that's tough since much is research or ad-hoc) c) make good investigation of conditions to be differentiated from autonomic dysfunction (simple dehydration, simple deconditioning, overt Addisons, etc.) d) consider "first-line" meds such as fludrocortisone, beta blockers, etc. (while investigating and considering contraindications) e) be quick to refer to specialist... cardio, neuro (of course a GE or other if symptoms steer that way) f) perform their duty of assessing psychiatric state with tact (avoiding aggravation of a condition exacerbated by stress)

He might be really screwed up or just mildly so (as is the norm) and having trouble with a tough situation. Little things can snowball even amongst otherwise healthy people... or people can mask serious problems and appear otherwise ok at most times. In some ways it doesn't even help to build up such notions of people... we are all quite broken or breakable in the end. On the whole, he appears to be as immature as most are in those years (I'm assuming he's a young lad, perhaps he isn't?). It would be rare for someone to have the natural skills to operate well in a relationship at that age even without complications of chronic illness. I would expect that your facing extra challenges has made you more mature than most, by necessity... so you're going to have an edge in that regard but this won't necessarily help (and don't let it feed a condescension). At a glance, injecting my personal bias and experiences, I'd say it would most likely be best to withdraw as gracefully as possible from an overly intimate relationship. Perhaps you two can maintain a decent situation or perhaps it would mean an end to it. The "ideal picture" that comes to my mind is that you two restore and maintain a friendship and he is able to mature to the point of having more helpful participation in your life. It is not your "job" to make that happen, and trying to do so is as likely to drive him away as it is to help. Sometimes there is a little art to getting closer... it doesn't always take a direct approach and the best friendships and loves usually are the kind that "sneak up on you" rather than those based on overt passion or even palpable attraction. Unfortunately those are oft recognized after the fact. It is very valuable that you are able to manage in college, and so wonderful that your family is able to help you with this. I don't know what all the options are (and there are likely serious limitations of options), but as cold as this sounds (and I am comfortable with being called cold I personally recommend living with some loneliness, if doing so allows you to continue a college "career". I would worry that you could get sucked into a bad picture that ends up destroying that opportunity. In short, I would recommend building a simple and sustainable basic living arrangement that accommodates your college progress... and insulate what you have going for you even at the cost of lost relationships. Everyone makes such compromises in life, and with a complicated condition it is both more difficult and more important to do so. But nonetheless, it can be the wisest route in the end... not guaranteed... not easy... not fun. Just real. Most live "fantasy lives" in college... some cannot afford to do so.

That book looks very handy. I have trouble reading (just a couple months ago I read my first book since dropping out of college and it was quite an ordeal). I have good luck with audio and this book is listed on "audible.com" so I'm gonna give it a shot! Thank you for the recommendation! http://www.audible.com/adbl/site/products/...UseBVCookie=Yes I had a lucky experience with my doc. I asked him straight-up if my troubles could be stemming simply from anxiety... his answer was "no, but there is crossover". I think that is a simple and valid way to describe it. When one has an illness that is provoked by stress amongst many other things (as POTS often is) it becomes just another thing one has to work to "mitigate" like keeping extra hydrated (even though dehydration isn't the underlying cause), etc. I personally get the "it's just anxiety" thing from my sister, not sure if it will ever go away as people become invested in their opinions (and can get locked in to them even to the point of delusion). So frustrating when those who need to be supportive, like family and doctors, end up being an aggravating factor instead. It's just "piling on" and rather cruel... almost a "self fulfilling prophecy" too, so if they succeed in stressing you out with their obstinance, they take that as evidence of their mistaken belief. Very hard and unfair to deal with amid a troubling condition.

Here's a huge discussion of Niacin. A bit past half-way down is a list of some food sources (plus "enriched" things like flour can include it). Fortified cereal is a biggie! A little further down are some estimates of upper limits avoiding flushing (adolescents being 30mg/day). These aren't "overdose" amounts, I've had 1000mg or more in a day... these are initial flushing estimates (before the body gets used to it). Also, it comes in different chemical forms which can be different but "ingredient" lists may or may not distinguish. Linus Pauling Institute on NIACIN If you're going to avoid it altogether, be sure to get at least a little from somewhere (probably inevitable for any varied diet).

Not sure how much they cost, but having a little "weather center" might be fun (or just cheat and archive the nearest weather station via internet). Don't look at the readings, but have them logged by machine or another person... meanwhile you log your subjective symptoms for a few months. Then later, look to see if something like pressure, change-in-pressure, temperature, etc. happens to match up really well. Sampling a single person is poor statistics but doing it in that "blind" manner is at least semi-scientific. It would be no fun, but a "provocative" approach might be next... where you submit yourself to a controlled environment and your reactions are observed. Might have to go to NASA for that stuff! Perhaps they will send one of us POTSers in to space one day, to see if we get "double POTS" or if we are pre-adapted and function well. I suppose one key "pressure" thing that would cause bad symptoms is cerebrospinal fluid pressure... but a spinal tap isn't such a fun thing (and the docs would really look at you funny if you requested one). They have to cautiously measure escape pressure, just as they tap it... not simply the standard procedure to get fluid sample. Or I suppose external pressures could indirectly affect things like the baroreflex/carotid and other cardiovascular sensors (that our autonomic systems use), intestinal pressures, eye/ear/nasal cavities, and who knows what else. There is the oddity that pressuring the eyes slows the heart rate... the ANS is a bit of a quandary.

These symptoms seem to cross over with POTS symptoms nicely: Hypoglycemia Symptoms I am a bit sad/frustrated because I "whined" as a kid that I felt hypoglycemic at times... but of course when the test came up negative I learned to stop complaining about my symptoms. Since it is not actual low blood sugar, what does one do to avoid these symptoms?

Oh yeah, your right... I forgot about that popcorn lung thing! As far as I know, I am not hazardous to be around... at least not from that odor, maybe a little extra methane at times Now that you mention it I get some urinary urgency and definitely extra frequency at times... even lost it once in public but I was on a boat and arranged to get splashed with water which appeared to cover it. I'll have to see if the odor coincides... that could make sense if the body is unloading an excess of something.

Thank you all for the responses! Looks like Janey has the closest similar thing, much more evident than mine for sure. I hope it subsides for you Janey... or if it does return, let's hope docs can eventually make something of it. The urine sedimentation sounds as extreme as a Rhabdomyolysis attack, but of different nature of course. I am still uncertain about my "buttery" issue... it could even be periods of hypersensitive smell on my part. I've been in med & supplement free period for a few months and have had it occur recently, so there isn't a direct tie in there. Foods & additives are always a possibility... I'll have to keep an eye on that. I have confirmation from others on the "ammonia" thing (and that has explanation with ammonia/nitrogen excretion), but I don't know if others would notice my my fresh-buttered scent. Perhaps my theories are half-popped. I will definitely seek endocrinologist scrutiny... I've only had a couple simple "spot-checks" and it is an important avenue to pursue and can mimic or exacerbate POTS stuff apparently. I am always curious about the acid-base things, it is very complicated and ties in with many things. It is held in close reign by the body so it's like a solid "backbone" to regulatory systems throughout the body and within individual cells... a push in one place can pop up in another (chemically & functionally).

Seems reasonable to have such sensitivity. I would also be curious about how treatments like hyperbaric chamber might tend to go for POTS patients. It could be helpful (especially for blood volume related things) but might also backfire.

It is a weird feeling! Uncomfortable, especially if you aren't expecting it. I got used to it and even missed it as my body got immune! But I'm an odd one. I would assume some could be extra sensitive to it as well, like most anything else. I even took it after sunburn, kind of silly since the skin is flushing on it's own at that point, but it seemed it might help speed the process with the extra blood flow as you mention! The "Focus" is interesting... if it also increases my chance of marrying a Swedish model, then I will buy a few cases of it for sure.

I have a very mild version of similar thing (though at times I can "see" it)... as I searched for matches the closest I came was Aortic Aneurysm: http://www.rush.edu/rumc/page-1160429744171.html http://en.wikipedia.org/wiki/Aortic_aneurysm I am only seeing this as a "partial" or "remote" match for myself. Not sure how well it matches your situation but it is worth investigating. Basically, it goes undetected often enough. An ultrasound seems to be the way to check for it. I'm sure there are other such things, or perhaps some totally benign explanations... or just "general blood flow" issues! But this is something that can be potentially serious and easy to miss so it seems worth a close look to me. --------------------------------------------------------------------- This EDS related post seems relevant. Also, I think this condition is also associated with "throwing clots" such as to the lungs (pulmonary embolism). I had an unexplained Hemoptysis (coughing of blood) so I keep this in the back of my mind as a remote possibility: http://dinet.ipbhost.com/index.php?showtopic=13160

Sweet! That's a new one for me "Shell"... adding it to my top top descriptions. Maintaining activity as best you can seems commonly recommended as it seems to give better outcome on average (and can minimize some known factors that exacerbate the situation). It is inherently challenging, to say the least. Perhaps make specific mention of the activities that you have been able to perform, the ones you have pressed yourself to do, and the balancing of reserve and "bite-back" issues... all with some patience & confidence (fake it if you have to). That's an impossible balance, I know, but it's a goal Seems like the most likely thing to assure him you are making solid effort and facing physiological challenge. I'm just saying to make sure you aren't "on the defensive" from the get-go... that can come across badly and feed any misconception the doc has. In the end, it's up to him to "get it" or not... no guarantees. Consider "couching" it a particular way (to avoid inherent issues of ego & role)... for example, instead of saying "Here are some articles I want you to read" which can in worst circumstance translate to "I think you're an incompetent doctor and even I know more than you"! I'd say something like "I came across some information that really seems to describe my situation... for example, when I push myself too hard I pay the price afterward so it seems like this exercise-intolerance thing is a big challenge. Do you have some tips to overcome it?". This informs the doc, invites positive participation, communicates that you are making effort (not depressed & helpless beyond what is inherent), etc. It can backfire and it is easier said than done, especially with a rushed primary care doc, a challenging condition, inherent frustration, fatigue, brain-fog... but anyway, something to shoot for. It's like "relationship advice" here... tough to say anything useful that isn't overly general to begin with! As for a profile of a beta-blocker responder... they say that one who responds well to beta blockers fits the profile of having "over-active sympathetic nervous system activity". What that means precisely, whether that is "literally" the real culprit, etc. is still pretty mysterious even though some very precise mechanisms are understood to a great degree (specific "receptors" and neuro-chemical interactions, etc). Here's a quick blurb from a CFS angle for a specific beta-blocker. Note that they point out some potential "detrimental" responders to beta-blockade too. This doesn't mean you have one thing or don't have another... one might be able to address blood-pooling with fludrocortisone/salt/water and a little midodrine and then get use from beta-blockers... They say one key rule is that treatment follows what works even if it is paradoxical or mysterious, baring clear contraindications, of course. Sounds like overall your doc is taking a decent approach. There is a chance he is trying to encourage you but is not a good natural "coach" or communicator... it's probably just not his strong suit. I hope that he comes around and gets solidly behind your effort... it is a shame to face extra challenge in an already challenging situation. I wish you the best.

Your pennies are gold. I had identical experience of mysterious and un-reproduced lab "spot checks" and I think your explanation makes it quite clear! It also hints at yet another factor that can exacerbate relative-hypoglycemic dips during our daily life (where the relief of going supine can also provoke an extra dip in basic energy supplies).

Definitely no big deal about the spelling here! As a tip, you can use the "Firefox" web browser to get spellcheck for any website where you type stuff in and post it, including this one! It is free, quite popular, and works great. It highlights unrecognized words with a red underline as you type, then you can "right-mouse-click" on the word to see suggested corrections. It helps keep me spelling good (grammar it does not do You can find Firefox browser here: http://firefox.com If you use shared computers like at a school or library, then you probably cannot add Firefox yourself... but you could ask if it is an option. If you are not comfortable adding software to your computer, please run it by someone that can give you advice & direct assistance... chances are they are familiar with Firefox already and could give you a hand. I'd hate to advise you to do something but be unable to assist if it complicates your computer use! It works great, but you know computers... there are always things that can get tricky.