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erik

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Everything posted by erik

  1. I've had high Albumin readings (and A/G ratio) repeatedly... classic & presumed cause is dehydration (but my electrolytes are always fine and I know my hydration pretty darn well). Other measures are usually taken simultaneously that make overt kidney/liver failure evident, so that would be expected to show up beyond the A/G stuff if it were going on. I did scrounge up this info during my personal hunt: Albumin: The Test This happens to me both off of and on high-salt + fludrocortisone + excellent water "hygiene/hyper-awareness". Perhaps something excreting extra amounts of one of those things is worth considering... my doc is keeping that avenue of pursuit open (while going down POTS lane). I also go through phases of water dumping and keeping up with intake... this is almost like ADH shortage (Diabedes Insipidus) at times, but it's episodic for me and apparently others with POTS too. There is the distinct chance that this baffling indicator is a side of POTS expressed differently amongst men. We are a rarity of a rarity! Any ladies getting this indicator? It could relate to the androgen picture, as some of our metabolic pathways diverge in those regards For example, it is said that during POTS episodes, the adrenals get called to action (catecholamine burst or replenishment)... this could bring with it extra side-activity since they handle some androgen precursor stuff too... or this could make a competitive shortage which is then being (over)compensated for elsewhere and showing up in this indicator. Did they manage to turn up anything (even speculative) with or beyond the calcium/parathyroid angle? I would really love to know too. I was considering a parathyroid hormone check too, coincidentally. Of course, I'll post if I can learn anything in my adventure. I wish you and your son well.
  2. I get a few visual disturbances from time to time which seem to fall loosely under a migraine or seizureish sort of thing. I'm not diagnosed with this, as such, but it's a possibility... besides the inherent effects of hypo-perfusion (too little blood/nutrients/energy) to the brain. I too am sick of the D-word (rhymes with knee-high-nation)... there is certainly more going on that that! I get such mixed results now-a-days from exercise. Sometimes I get a little improvement, sometimes I hit a brick wall. I try being really mild and can still get bit. If there is a hidden pattern to it all... I don't have the decoder ring.
  3. I hope treatable Lyme ends up being the case for many, could help a lot of folks. Seems like screening for Lyme should be standard procedure for POTS patients (not that there is a standard)! There just as well could be other little buggers floating around that don't happen to have diagnostics tests available (and the Lyme test can give false negatives, too). Coincidentally, before even learning of POTS, I did a month of Doxycycline out of personal concern for leptospirosis exposure (unlikely, but I was feeling extra horrible and wanted to eliminate that possibility after potential exposure on a hike). During that time, the nurse would gasp at my vitals... she even doubted and double checked her equipment! Anyway, depending on the doc, they are not overly stingy with Doxycycline and it's even used prophylactically some times (that doc was an adventurer and did this himself, so he was more inclined to entertain my concern)! I may have had a mild help from it (nothing dramatic for me), but my symptoms wax and wane so I never really know what is helping or hurting specifically. I might try it (or another antibiotic) again if I can, now that I know more about POTS and what to look for symptom wise (but my case may be the central brain trunk variety). I will bring up Lyme test with my doc. Is it something you have to "fight" to get tested for?
  4. Plausible. Even if it's not directly connected it could be a benign sign of a predisposition (genetic or otherwise)... that if combined with several others gave greater odds of HD. Would it be an indicator that someone should seek out extra testing? Any specific kind? I don't seem to have it... but maybe the chain from my ear to my nose ring is pulling the crease flat? Just kidding
  5. I may have gotten that right from a Dr. Grubb article or web page! I'm mostly just regurgitating from a mess of internet reading/research!
  6. There is this angle if one wants to get speculative: Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders ...which may/not describe your symptoms? It suggests a plausible explanation of some stuff. I don't know if mast cells hit everywhere or in zones (or if nerve branches could be involved like with a shingles infection)... or if "families" of activated receptors could explain regions. It all gets more than a little complicated! Or perhaps the normal extra blood flow to heal the muscles after the workout could be involved (localized vasodilation via alpha or beta receptors or nitrous oxide or whatever is going on naturally). Perhaps a normal response exciting something else like latent allergic potential or "histaminic sensitivity" or semi-dormant skin infection as was mentioned. Or if there were a mitochondrial level dysfunction... there could be difficulty expelling aggravating byproducts of the exercise... but those make generalized symptoms of extreme fatigue post workout... not sure about itchiness. (Just throwing out loose ideas in case anything "sticks"... the Al Dente school of brainstorming
  7. Not confirmed, but if I have the damage, it was from head injury which preceded these symptoms by about half a year. It would be classified as hypopituitarism or panhypopituitarism (across ACTH, ADH, TSH, FSH, GH, etc.)... or be termed secondary/tertiary insufficiency of another gland (adrenals, thyroid, etc.). The odds of spontaneous failure of those things is next to nil... but once a known insult to the region has occurred, it reportedly becomes as likely as any other explanation for symptoms. I have read that it can result from head injury, infection, toxin, etc.What caught my eye is that they say multiple hormones and any extent of disfunction can be involved... making clinical and testing situation even more challenging than they are. Also, one known scenario just happens to present symptoms identical to POTS w/OH (but without overt Addison's). MRI might be in the picture eventually. Coincidentally, an old friend was awarded DOD TBI (Traumatic Brain Injury) recognition not long ago, having imaged previously undetectable damage (of assistance to those suffering IED injuries and such). Quite proud of him. He's a neuro doc and if things look to be going that direction for me, I may ask him for a little favor
  8. I might. I have a pulse-oximeter that indicates brief episodes of tachycardia during sleep (potential sign of sleep disturbance so perhaps something similar to your case). A nightlong pulse-ox graph is not a substitute for a real sleep study, but for me it was an experiment while I awaited the real deal. I do feel "half-slept" all the time. Even if my sleep ends up testing normal, it was via my "playing" with the pulse-ox that I discovered & documented my POTS signs... otherwise, I'd still be suffering mysteriously (and with no medical help)!
  9. Cortisol is essential to vascular response and low-cortisol means high-insulin and low-sugars... also low energy, orthostatic hypotension, postural tachycardia, etc. But one is supposed to be screened for Addisons to end up with diagnosis of POTS, so at least by conventional measure & understanding, cortisol is off the hook in POTS theories (but happens to be an exact match for my personal set of symptoms and can be accounted for by mild pituitary/hypothalmus damage).
  10. Yes! I have EXACT SAME "internal" tremulousness... very frequently (almost always now) but mostly mild in my case and was considering posting a question about this myself! So glad you brought it up. Sometimes I can make it slightly visible in certain muscles by holding things a certain way but not always (a neurologist trick I read about). I wondered if it might show up on a "nerve conduction" test or EEG but maybe not... or in some hormone/catecholamine measure (like issues ramakentesh mentions). For now, I just consider myself fortunate to be getting a TTT as opposed to a free bed in an asylum, though the latter sounds tempting at times
  11. I'm half with you on the BP side... for me it is only an intermittent problem! Plus my numbers don't usually go very low (starting in high-normal BP range and dropping to 110 or so, except on very bad day). However, my pulse will double or more upon standing... (sometimes coming from the 40's). The bradycardia makes the doc shy away from beta-blockers for me. One weird thing is that I start to white-out in just the 90 systolic range... so it's perhaps some ill-timed blood vessel constriction in the head too (which I've read about in relation to syncope probs). I think passing out is normally below 60/70 or something so I'm a "sensi" in that realm (a little "scrubs" lingo). I get confused when some say its POTS only when there is NO orthostatic hypotension. Here is an example, from Raj at Vanderbilt (the POTS mecca): http://www.ipej.org/0602/raj.htm "Postural tachycardia syndrome (POTS), characterized by orthostatic tachycardia in the absence of orthostatic hypotension..." ... so perhaps Erika is the only one here that actually has true POTS!
  12. Some antibiotics exhibit neuroprotective effect, separate from the antibiotic effect... so there doesn't even have to be an underlying "infection" being tidied up, it might be treating a neurological problem directly. In other words, the Lyme disease hypothesis isn't strictly necessary to explain why some antibiotics might be effective... if they are. Hope so (and other experimental neuroprotective agents could be handy too).
  13. I've been spared major digestive symptoms but I can throw out some tid-bits from my reading that may help... or at least further confuse the matter!: It happens that a bowel movement is similar to a Valsalva Maneuver... and POTS sometimes exhibits altered response in that clinical measure. It is also a trick for free-diving... valsalva that is, to slow your heart & oxygen use... unless you see a shark, in which case rapid heart rate and a bowel movement is standard! Also, carotid stimulation can provoke unusual response in some, and might tie in. Maybe a neurologist could make something of some of your symptoms or at least screen for some things... since they do those tests. Or now that I think of it, a cardiologist will sometimes put you in different positions or use a valsalva in order to catch transient signs, so they might pick something up and know what to make of it or what to screen for... especially since your palpitations are a concern. When I was hunting my own symptoms a while back, I came up with "right vagus" over-stimulation as a decent match. There is a reason they don't use it normally. They mention that "cardiac symptoms were induced by stimulation of the right vagus nerve" mentioned in this rare human case: Right-sided vagus nerve stimulation in humans But remember, the nerve may not be the source of the problem, just the messenger or a victim to bad "parameters" set by other things (regulatory hormones, other nervous signals, electrolytes, whatever)... and overall acetylcholine levels (like Alicia mentions with Levsin). I've forgotten the symptoms of a cut vagus nerve (many bodily functions proceed surprisingly well)... but it might be worth looking in to for comparison. Post-parandial (after eating) effect is usually attributed to normal blood circulation changes (to facilitate digestion) aggravating a low overall blood volume (and further exacerbated by lack of constriction in the rest of body). I sometimes get post-parandial effect big time (and assumed it was a hypoglycemic rebound)... Coincidentally, I have now read that "relative hypoglycemia" is more common for those with POTS, so that might still be in the picture as yet another compounding factor. (I happened to confirm this as suspect with my glucose meter readings). Finally, this is a fun article to put to rest the notion that the digestive system is just a place where symptoms are expressed: The Gut Is Said to Have A Mind of Its Own
  14. I might just wear a "My Mama Says I'm Special" T-Shirt from Bubba Gump Shrimp Co.... And this might be more catchy as far as medical acronyms go: Posturally Upregulated Tachycardic Zebrinny (A Zebrinny being a zebra/horse blend... referring to the medical axiom "If you hear hooves, think horses not zebras"... yet we're more like the offspring of horses that sewed their oats a bit erratically On a serious note, gotta keep in mind that POTS comes from a multitude of pathologies so naming it for just one variant isn't appropriate... it's not always from the "deficient response of vascular bed" source. Some day when things are more pinned down factually, it might break into different diseases or perhaps "Type I, Type II" for some leftovers.
  15. Modafinil's patent is up. Generics will be out soon and even ProVigil will drop a bit in price. NuVigil (Armodafinil... the chemical "r" antomer of the modafinil blend) claims nothing huge, just modest side-effect profile. Please do Nu if you/your-plan can afford it... that will fund advancements that might make the difference to you or others down the road and keep the braniacs that dedicate their lives to these things doing their magic and helping us. I tried Adrafinil, the predecessor of all these. It has worser side-effect profile and happens to break down into Modafinil in your body after 'bout an hour (but might have direct activity too, nobody knows). It was of modest assistance to me but nothing huge. It is not cheaper per effective dose than Modafinil but is sold in smaller amount & in U.S. is legal for personal use sans scrip.
  16. Count me in the "worse in AM category" at this point. When evening comes, I'm either out like a light (ironically, falling asleep so quickly that I leave the light on or I get a second-wind (well, first wind). For some reason, I used to be the opposite for a while... I had a couple hours of feeling alive and capable first thing in the AM which quickly vanished. Sleep isn't restful but I don't have a direct explanation and don't usually wake up (unless my body dumps all it's water which it does intermittently). Sleep disturbance can be partial, only keeping you out of the deepest sleep... and POTS is said to be associated with less than restful sleep. There are sleep disorders where one's circadian rhythm is off... maybe we can be "half-off" just as we can be "half-rested". I'm approved for sleep study for apnea concern but haven't had the opportunity yet. Anybody else had sleep issue confirmed medically that might explain this pattern?
  17. Hard to say. I don't know of a good explanation for it. I happened to have a generalized itchy phase for a while (which I attributed to fludrocortisone) that was followed by a pealing almost everywhere phase but it was progressive over a week or two and not tied to a particular exercised area. I think a pins-and-needles and/or flushing kind of sensation would be more typical than itchy, but they could be similar... like a nerve thing? Not sure. The soreness sounds totally appropriate, but itchiness right in the same area is intriguing. Does it happen elsewhere, like in the legs at all? Does it come and go quickly or is it more like a rash thing? Just curious... I don't know what it is or if it can tie in with POTS.
  18. Here's my bag-of-tricks from which you might pick and choose a few that suit you: Glycemic Index concepts (slow-carbs, carb/protein blending) worth learning about but not a silver bullet. "Frequent small meals" approach is wise, energy-sustaining, weight-loss & diabetic friendly and helpful for POTS (minimizing post-parandial circulation effect). Low-fat is challenging but well worth the effort (it's tough if you love butter more than sweets, as I do). Supplement with some flax & fish oils to facilitate "good fat" utilization (some are said to help burn stored fats, too). If you lower calories significantly, throw in a multi-vitamin to cover yourself. I methodically tried various supplements and few showed promise for me. None were of "stimulant" variety... except mildly so with Claritin-D... from which I get mild "flutter" at times. Use extreme caution with anything in that realm, based on your known sensitivities, medication and doctor's advice (probably just skip those things, like I did). A fat-binder like orlistat is rather benign (correct for nutrient absorption issues, though) but it's not pretty if you exceed the allowed intakes! Seemed like it could safely help a bit, but I didn't bother. Caution: High-protein is problematic for dehydration. If you dehydrate & exacerbate POTS & impede your stamina more than your (our) existing challenging situation... what have you gained? If you insist on this technique or find it effective, probably stick to a moderate target like the "Zone" (40:30:30 Carb:Fat:Prot ratios) and keep water intake very steady (wary of ketosis if pushing things). Don't do it for long, and re-introduce carbs in slow, controlled taper afterward (to avoid rebound effect that bites most people). Better yet, if doing low-carb or super-low-calories, follow a cycle 3-4 "on" days with 2 "off" days ("off" doesn't mean splurge!). This allows long-term application of what are short-term & problematic techniques. Low-carb is like mild starvation... when the body starves, it holds on to food/fat, defeats your effort and zaps your energy. Be cautious and work around or avoid this. As an easy fix, if you're disciplined enough to do low-carb... just do "good carbs" instead... fibrous stuff, basically. It's smarter than too much fat or protein. Anyway, I lost 80+ lbs and self-taught proper nutrition by tracking everything I ate (calorieking.com, or similar) and reading everything I could. Top recommendation is Tom Venuto's work (no you don't have to be a bodybuilder, bodymodel or athlete... but it's fun to pretend). I ramped exercise from 0 during an injured/rehab state, slowly up to 1000 cal/day avg. (until my POTSish fatigue dictated "you shall be totally stagnant again"). Be leery of "overtraining" and pace yourself, especially due to the POTS sensitivities and proclivity for fatigue. My best period of weight loss coincided with steady significant exercise fed with very high-carbs, minimal-fat and modest steady protein (amid healthy flow of H2O)... the old-fashioned sound heart-healthy diet. So long as I burnt more calories than I ate, I lost weight! But you see, I actually knew my net calories... and the nutritional content of every food I ate (within reason). By logging food I was able to wing-it freely, yet apply sound targets with no hard restrictions or strict plans. Self-discipline amid a free system (very libertarian, eh Also key: From behavioral science... logging food disrupts habitual patterns and affords their replacement with sound "conscious" control and new habits. Like a sustained "intervention" and retraining! If you can build an approach that you are able to live within and slowly improve over time, the challenges become less painful and more rewarding... then you grow "healthy impulses"... well, at least more than before. As a caveat, significant weight loss such as mine contributes to vascular denervation, hence POTS aggravation, but one just has to deal with that... hopefully it's temporary, not sure.
  19. Sorry I don't have any directly helpful tips, but I'll throw out some factoids & opinionoids anyway! I think potato's have more potassium than a banana anyway, so that could be an option if hunting for K! (Just as chicken has more L-Tryptophan than turkey... and neither actually make you sleepy... but somehow these things get out there and live on!) Anyway, look to details of the nutrition and you're likely to find something to choose from if you suspect a dietary shortage or sensitivity. I took K and magnesium supps in moderate amounts while taking fludrocortisone (since it instructs kidney's to hold salt & dump potassium), but it's not necessary unless you get bad electrolyte measurements (the doc should monitor electrolytes and advise especially if a med has such known side effects). If you're getting bradycardia directly from electrolyte disturbance you are in the 'serious medical issue' realm and need to address it pronto via your doctor. If it is something else, like hormone imbalance or neurological (vagus nerve stimulation does this) then they seem to write it off (but probably shouldn't if you have symptoms). I did a steady 40bpm in the ER on EKG not long ago, yet athletes I talk to say they only got into the 50's with hard work. Perhaps the fact that my heart rate doubles or triples immediately upon standing means I am "exercising" much of the time and am hence, a world class athlete. Anyway, 25bpm is the world record RHR I read about for a healthy person (a top-level athlete). In athletes, it is a complicated & controversial issue and ties in with sudden death (via hypertrophic cardiomyopathy & arrythmias)... and you basically have to decondition your self to get treatment.
  20. Cushings can cause high sugars & lipids. It is not something an endocrinologist would miss if there were any signs of it though. Also, POTS-like symptoms are more akin to the Addison's side of things (the polar opposite of Cushings) so there is at least a surface contradiction... in fact, there is an obscure secondary Addison's (likely only in head injuries) that looks identical to POTS. I had high sugars & lipids a while back and couldn't get a single high reading with a glucose meter, so I was similarly suspicious. Nonetheless, I did all the advised lifestyle changes and may have helped that situation... of course, rapid weight loss can cause vascular bed denervation which seems to have exacerbated my POTS to the point that it is now medically prominent. But life is like those gofer smashing games sometimes (my deep thought for the day
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