erik

That is wonderful. Hopefully Santa will bring you a lasting healing this year! ...and perhaps a nice cut of venison (arctic reindeer is the best)... or maybe that's Ted Nugent I'm thinking of... either way, congrats & best wishes

It is sad. Before POTS I was able to make a living with my mind. Now with the bouts of brain fog and mental fatigue, I've had to fall back to my physique... I'm ashamed to say. But enough of my sob story. I am hopeful that with proper treatment I can make money while wearing more clothing again.

Part of my "cognitive rehab" program is to be a smart aleck... I guess scientists say working the "abnoxious center" of the brain can draw increased blood flow and neural regeneration. Seems to work a bit, though one risks increased social isolation by driving folks away A few months of this and I'll have a "sardonic six-pack"! I guess this is the (or one) source of testing here: http://www.vipdx.com/ (I'm a little bitter that they used one of my portfolio photos on their home page without permission, tho) It is very exciting to think there could be a definitive cause (and potential rectification) to pin down for a decent number of us folks. The "leaky veins" thing seems like a great commonality between the XMRV effects and POTS/CFS... even if it is just a "contributing factor" rather than the whole story. I can't afford the test at this point, but maybe in the future.

XBOX?

Oh man. On day at a time is sometimes what it takes. Make sure to draw upon whatever support does remain for you as with your parents, and be sure to treat yourself well. You deserve better.

It's funny you mention that. Though I don't have night sweats, my occasional "goo" tends to hit my hands & arms after exercise, particularly after they have gotten especially numb, irritated, weird during a walk or something (almost feel swollen). I guess exercise is a potential mast trigger. Hadn't noticed a smell to the goo itself, but after scraping it up in my finger nails in fascination I tend to wash it off. Perhaps I'll give it a sniff & taste test next time or collect some in a jar and see if it get's pungent after some time I've taken Claritin to help me feel better exercising in the past (figuring the mild "pressor" effect is key but wondering about the anti-histamine too). Perhaps I'll try just a benadryl and see if the goo happens less when medicated as such... maybe it's "mast" related and I can block it and the bad feeling in my arms during (non-arm) exertion???

It can potentially help to characterize the fatigue as best you can. It sounds like you've done that already and have an emphasis on somnolence, perhaps "excessive daytime sleepiness" which docs might have certain strategies for (including considering illnesses that tend to cause this, ensuring diet or behavioral things are maximized to oppose this, considering medications to counter it). This might be different, for example, from a person who's muscle activity wanes prematurely (low level physical fatigue, muscular or neurological or mitochondrial whatever)... or different from someone who wakes up fully but just doesn't get the umph to do stuff (like a central fatigue) but can still force muscles to perform... or different from cognitive fatigue, and so on. Might even be different from "fatigueability" where one has runs of pretty normal activity but it dies out prematurely and/or can't be recovered from afterward. It's just one of those words like "dizzy" which can mean anything from fainting, lightheadness to detached to full vertigo. Just be sure to be as clear & specific as possible with docs so they've got the best shot at addressing symptoms (if not determining underlying cause). Sounds like you've got a hold on this, just mentioning it generically.

I use Firefox. I enjoy the spellcheck performed automatically when filling in textboxes (like forum posts)!I also use a plug-in called "wired-marker" which, though it won't bring solution & simplification to any problems, does do some cool stuff when trying to research stuff! Basically it enables one to build tagged & commented "highlights" of web pages, which one then can examine from different angles later. For example, I highlight symptoms, measures, treatments, especially-notable-info, etc. Later I can peruse (or make report of) those topics, seeing the highlighted info, any personal comments, and with quick access to original source (or a cached copy). It is a "power tool", not a life simplifier... but I mention it because it was helpful for me weeding through the many different conditions that cross over with the notoriously "non-specific" symptoms of POTS, CFS, et. al. http://www.wired-marker.org/en/index.html It's like what you would do with a box of different colored highlighter pens when tackling a library of complex intertwined information looking for "subtext" or "cross source themes"... after drinking a full pot of coffee, of course. Very "wired" markers, if you will! I use it in addition to a categorized/hierarchical bookmark collection... with my bookmarks being organized by the stated primary topic of the web-site... and the wired-marker embellishes by leaving color coded highlights right on the pages and tracking super-topics across disparate sources. For example, a page talking about a specific endocrine disorder might list symptoms, chemical or exam measurements, treatments and something that strikes me as insightful but nonspecific or allusion to "link" with a different disease. I'll flag those individually. Makes for a "rich" and multi-organized information set. Full overkill, and not for the feint of heart... but a fun tool.

I bumped into this article which I had bookmarked when trying to understand some details of MSA (Multiple System Atrophy), PAF (Pure Autonomic Failure) & PD (Parkinson's). Looking at it now from a NET activity perspective instead, it seems to indicate that at least one expected/assumed NET inhibition response is not as simple as one would think. They even have their study hypothesis partially contradicted (whereas most studies tend to be designed with every intent to prove a hypothesis)... which is a subtle flag to me of an extra informative study since it doesn't simply confirm prior assumptions and instead the body talks back to the researchers a little. Essentially, the assumed hypertensive tendency of NET blockade is sometimes countered by central regulatory compensation. This distinction is drawn out, coincidentally, by differences between a couple potential autonomic function disrupting conditions. In addition to central (upstream) counter regulations like in this study, it seems to me there could also be at least 4 other natural compensations to reuptake inhibition (a.k.a. more umph to each firing): Long term receptor population adjustment; Temporary receptor antagonist increases (some localized regulatory messengers appear to do this); Feedback to the ion channel regulation (if the firing threshold is not met, the neurotransmitters never come in to play in the first place and both upstream and localized messengers apparently affect this... some perhaps still being discovered); Inherent mixed effects of stimulation (the receptor complex for vasoconstriction is said to locally feed back to inhibit it's own subsequent triggering... ), etc. Basically it seems like the story wouldn't end even in cases where a specific mechanism of NET inhibition is found.

Yeah, I also wondered at first if it was from a bad dream or other sleep disturbance, because I have had times waking up in agitated state (body panic)... however this vibrating thing is more subtle and just there in the background amid an otherwise calm body & mind (for me at least)! Not sure if it was just a coincidence or not, but I kind of transitioned from a period of frequent myoclonic jerks (a harmless seizure thing) into a phase of this mini-tremble & hum thing. So it also makes me curious if some fine tuning of "action potentials" in the neurons is at work too (like ion concentrations and the like)... since it's kind of like a low idle of an engine warming up... in contrast to my prior mis-firing of the myoclonus. Like my body adjusted things as best it could but was left with this slight artifact (inability to fully shut off muscle stimulation noise at times). Just more conjecture, of course! This thing has intrigued me since it's different than the tremor and wobble that I get while attempting to stand up & still... as the sympathetic system comes rushing in to compensate for inadequate natural orthostatic response.

http://www.whoissalt.com/ I was caught by the name (and of course Jolie draws some attention). I suspect she is in fact an undercover agent who suffered an autonomic disorder, then with advanced (yet secret) technology combined with mind control techniques actually learned to consciously regulate her autonomic nervous system... doing this to become a super-spy able to evade any and all means of interrogation (from high tech gadgets like the brain scanner pictured in the movie preview... to intuitive senses of people, even loved ones, around her... not to mention the boring old "galvanic response" lie detectors). No doubt the title and her name is an allusion to her need to consume copious salt to maintain her autonomic super powers. I think I give this one a pre-viewing thumbs up! See ya in the theaters... with my over-salted popcorn!!! Miss Voight & I are pretty tight, so she gave me a heads-up on this movie. I love Patriot Games and that genera so I think it will be cool (same director I think).

I wake with this daily now. It feels a bit different in the AM compared to other times... whole body is fully relaxed, no symptoms of "excitement" anywhere as from sympathetic overactivity, then there is this mysterious hum rather isolated and unprovoked. If the muscles are vibrating slightly it could help by keeping some musculoskeletal pump action going (assisting blood return to heart) to make up for lack of overt muscle movements. That angle would make it an adaptation along the lines of other key POTS symptoms (except spanning more than just circumstances of orthostatic challenge). Chemically, there are likely more than a few things peaking or troughing in the AM in preparation for awakeness... I've heart cortisol should be coming up strongly and in reading of LDN (low dose naltrexalone) happened to notice a statement that endogenous opioids are peaking just before waking (which matches the timing of this for me perfectly). I've tried to guess a "frequency" or pitch to it as well, since sometimes that gives a neurological clue, but it is hard to tell. I've also looked in to "muscle fibrillation" (not heart kind), which perhaps coincidentally fits "how this feels" for me perfectly. The latter tends to relate to neuropathy or muscle atrophy. I don't personally have an overall atrophy, but there might be a low grade cycle of it... particularly if things like post-exertional muscle growth were perturbed. That happens to involve complex processes of angiogenesis... blood vessel adjustment & formation... which involve things that could be problematic in POTS folks like intentional stages of "leakiness" in vascular bed (during growth), localized vasodilation facilitating extra supply & clearance, significant release of localized messengers that we may mis-react to, etc. If disturbance in or related to those low level things were going on, it could time with a few things like both post-exertion & nightly growth phases (it is when the body focuses on these things)... anyway, existing or new little nervies could be either goofed, or perhaps just naturally helping by subtly stimulating some extra circulation. Also, if there is turnover in muscle tissue (which is said to be a natural cycle especially after exertion), new fibers might be expected to fibrillate (just like denerved ones) as a normal course of development (or exacerbated by slower nerve regen if that is the case).

I should add briefly that one of nuVigil's attributes is said to be it's longer half-life of something like 15 hours. Half of a ProVigil dose is identical, the other half is metabolized quicker so one would expect a bigger peak and trough effect (and perhaps need of/opportunity for multiple dosing). Also, I did have some blips of short term memory loss but I get that on my own from time to time. Others have mentioned this as side effect so maybe mine was such or maybe it was just me being me or being fatigued!

I've got 3 things I can choose from as provoking this for me... couple bad things as a kid, a head injury & O.I. First item was marked by sudden & severe episodes and probably subsequent tendency (habituation). Second item led to months of pervasive "feeling like a ghost" which raised the prior memories (an associative memory of the "state of mind" itself, not a matching situation). OI is probably there exacerbating it periodically as well, and of course bringing lesser things like simple lightheadedness, dizzyness, et. al. Anxiety has always been the clearest provoker for me, and is said to do so for most folks. If the experience itself brings you anxiety it can spiral... just like panic attack can be increased by worrying about it. As others have recommended, doing your best to not let it get to you is an important technique to master. There isn't said to be an easy fix for this. Some mention of ProVigil helping some folks caught my eye a while back and in taking NuVigil recently, it did seem to give me a hint of relief in this regard. If you are one of the folks who are masking a pain, relief of this symptom can be a mixed blessing and might merit caution (some extra fortitude & tidying one's psychic scars somehow is probably wise). It seems some make claims that LDN (low dose naltrexone/naltrexalone) can help too. In general, I guess they say one goes after the source(s) to find relief, though. If psychological categorization is an issue, one might press for something like the "from medical source" or "NOS" (not otherwise specified) categories in the DSM to avoid the personality disorder realm. I think there is a "dissociative disorder NOS" existing... not sure about a "medical source" other than drug intoxication and such... dissociative drugs like PCP, ketamine are the more reliable inducers as well as psychedelics & perhaps cannabis less often. I've not heard of inducing it through simple lack of oxygen in general... perhaps chronic cases?? It would get blurred with lightheadness and syncope... which make a dissociated feeling seem at home. It is when it's separate from those that it is freaky... harmless, but freaky. I'll never personally be able to separate psychogenic, physiological & spiritual/philosophical components. I also find it hard to ignore the apparent similarity between the physiological aspects of POTS and those of stress & trauma... some of the low level body reactions seem to overlap and I find this informative. The body can be bizzare. For example, they say ADH (antidiuretic hormone/vasopressin) which tells kidneys to retain water, is also involved in memory formation of various sorts. Go figure. Still, defining a "state of consciousness" is inherently challenging and few embark on that (noetics being some, though I find them a bit sketchy for my own personal reasons .

I've not had vertigo but have had significant night disturbances over the years. It sounds strange but for me sleeping with head elevated is somehow a huge factor when I'm in a phase of this stuff. If you haven't already, might try the elevated head sleep trick that is recommended for POTS at least. I did it in a lazee boy, intuitively, years before ever hearing of POTS... I was practically afraid of my bed and only used it a couple times over a few year period, but had no explanation. (Perhaps check this old topic on pre-diagnosis intuitive treatments & adaptations for some fun). Anyway, no guarantee but elevated head sleeping a reasonably easy thing to try. I get this stuff from alcohol too (not surprisingly I almost never drink any more). It has many effects, from GABA agonism which will wear off through the night, being a diuretic, an adrenal (HPA) adjuster, to being a super-sugar which ought to give one a nice peak and fall of blood glucose (reactive hypoglycemia). I had a daytime episode identical to my night symptoms, timed exactly with a relative hypoglycemia caught by glucose meter (while probably also being slightly blood volume deficient). Dehydration exacerbates hypoglycemia sensitivity. POTS (and maybe others) are said to be more sensitive to blood sugar fluctuation. Just another angle that may or may not apply to your situation.

I did the nuVigil (armodafinil) trial offer mentioned above in post#3. It is pretty subtle but helpful nonetheless. Hard to describe but it does contribute to wakefulness and mental focus (for me in a gentle but noticeable way). It is a different effect than caffeine, though perhaps comparable in "strength" to a cup or two of coffee (and lasts longer) to put it in some context. I've not tried an actual stimulant yet, but I have to assume this is less potent in effect. If one is leery of stimulants but insisting on seeing if they can help symptoms, this is probably a good quasi-stimulant option to get a sense. Of course, responses will vary and you must use your own best judgment in this. As for battling fatigue, I didn't personally feel much of a "physical" side to it, mostly "cognitive" (though this family of drugs is apparently tested for in endurance athletes... and tends to be given away by the sulfur urine smell). There could be a little assistance to physical activity, just nothing extreme. I typically have my thoughts peter out early and also have trouble with extended mental activities (at worst, having to take breaks every 10 minutes from exhaustion... like mini-naps over and over to keep going). NuVigil seemed to help subtly but significantly with both of those things. Nothing night & day... I won't be designing a working fusion reactor any time soon... but I read & understood longer & better than I have any time recently. I personally felt calmer mentally despite it having "alerting", "vigilance" & pseudo-stimulant effect. Something akin to being more "contemplative", but not meditative or anything... just a little more "penetrating" thoughts and focus. I think this matches an expected ADHD benefit... where a "stimulant" can be "calming". In a way, it was mildly anxiolytic. This contrasts with caffeine, which can be helpful but leaves me a bit more prone to distraction and even agitation after too much or too long drinking it. There was no "wired" or hypervigilant feeling from my dose of armodafinil. Caffeine suites me fine for enhancing endurance while "doing", performing mental activities I already know... nuVigil seemed to actually improve focus necessary for "learning", which I don't personally get from caffeine (or only briefly). I felt no drive to "get out and boogie" (a.k.a. be more social) but felt more "present" and comfortable in the few social experiences I had. After a few days in a row, there was a very mild boost to mood... good mood, that is Didn't notice any extra "intensity" in feeling other than a mildly "more present" sense (ProVigil apparently helps some folks slightly with derealization). My trial was about a week, so I don't know about longer term effects yet. I didn't notice any crash as it wore off. Was just eventually back to normal and perhaps a bit tired (in a normal healthy way from modest "mental exertion"). Benefit might have tapered a little after several days, though its hard to say. I did not happen to experience notable side-effects. I did not have insomnia, but was up a little late on the first day taking it (was noon dose rather than AM). I did have some mild headache but this was after pushing my focus & endurance further than normal. I could see there being an increased tendency to palpitations. When I combined with a little caffeine I got more palpy... as I also tend to get from pseudoeffedrine/caffeine which I can get away with if I am cautious. The nuVigil was less palpy prone for me than pseudoeffedrine and probably less than significant coffee, but there is some mild "pressor" effect along those lines... I might have had a slight boost in HR and very slight in BP if any. For example, I'm typically BPM of 40's or low 50's when supine but was more likely to be in the 60's when supine on nuVigil. I might have felt a little quicker to go tachy upon standing, but extent and impact wasn't made worse for me. Maybe it was like a 2 out of 10 for making tacky & palpy worse... and a 2 or 3 out of 10 for reducing chance of hypotension on standing. For me, basically akin to a little coffee in those regards. I took the larger dose available, 250mg (rather than 150mg), once daily in AM. I weight 220 lbs or so. Perhaps being a brain med means body weight doesn't matter, I don't know. As you mention, a rather high dose of ProVigil would tend to be used for our circumstances rather than typical. I did not happen to try a double dose (or partly overlapping dose, which is what I'd try first). Not sure if nuVigil dosage translates to a ProVigil (modafinil) dosage of not. Armodafinil is the R-enantiomer of Modafinil (which is racemic). I've also tried Adrafinil which aside from taking the extra hour in the body to be metabolized into modafinil, is "dirtier" feeling and I notice it more in my heart and very little in "cognition" just a bit more awakening. I've not tried modafinil yet. I may end up with that as my regular prescription depending on how they cost out nuVigil in comparison. They may go cheap on it to help get people to switch to the newbie, or maybe they'll go "premium" on it since isolating the active isomer can sometimes clean up side effect profile (it certainly seems better than the old old original).

Aside from meds, they might help with hydration, electrolytes, etc. Maybe some modest glucose IV if measured to be hypoglycemic or even some vitamins if they are going low from nutrition challenges. Those things can help your body battle the illness itself... and screening for serious stuff can be wise. If you can manage it safely, an urgent care clinic is a good idea. Places always give me a couple bags of saline IV, even if everything tests normal since I tend to have O.H. to some extent at most times. Even just some saline could give you a boost for a while. If you are having serious challenges, then even a horrible cold or flu can merit a hospital stay to keep in a safe environment while recuperating. It seems like overkill but it is not and is understandable when conditions merit it. Have you managed to get some nutrients lately? Is there a chance that I.V. antibiotics would avoid the bad response?

It is likely true (assuming a very light intoxication) but I would broach this issue cautiously with public folk and patrol officers! And your prior descriptions that your symptoms tend to subside when leaving for a vacation and get worse upon return to work can be easily taken out of context too

The classic heart ranges are for sitting after a bit of rest, IIRC. Here is a site with an over-abundance of information, charts & graphs! http://www.vaughns-1-pagers.com/medicine/blood-pressure.htm However, keep in mind those ranges are applied to an overall average. For example, one is not hypertensive during just one high reading... that is a misapplication of the term "hypertensive". Actual BP will vary a decent bit even for a normal person (without a dysautonomia) and can do so throughout the day even during similar circumstance & activity. This article offers a summary drawn from a Streeten book (a late OH expert and CFS guy) regarding supine vs. standing ranges & responses: The reference came up in an old post on this forum. Light exertion is going to vary tremendously from person to person. Generally being "well conditioned" would imply a lower resting heart rate, a lower rate while exerting, as well as a tendency toward widening of pulse pressure (the difference between systolic & diastolic) indicative of "more efficient" cardiac effort as opposed to simply "greater effort" or even struggling. That widening of pulse pressure can mean that the heart is moving more blood even though systolic blood pressure and heart rate don't make it look like extra effort is expended. For pulse, this graph can give a very approximate idea of a "light exertion" zone for various ages (by approximating resting & max heart rates rather than measuring them): http://en.wikipedia.org/wiki/File:Exercise_zones.png Not sure about BP ranges with light exertion... I'm sure that will vary significantly. My understanding is that exertion does tend to raise BP.

Tachy, if you are the one who feels like me when I am not myself, then I think I must offer my sincerest apology to you... This sort of transcengenderdentalism could result in any assortment of miscreant feelings... or perhaps erratic impulse shopping behavior. You have not, by chance, been mysteriously downloading 80's tunes such as "I Ran" by A Flock of Seagulls or "Alone Again" by Dokken... or perhaps caught yourself at the checkout line about to purchase the latest Maxim and/or motorcycle magazine??? If so, please forgive me. The Tach-ster's technique and the resultant causal quandary reminds me of a great work by famous American author Marko Tween. It was titled "Huckaloogie Finn"... the favorite of many boys and more than a few ladies too (I carry a handkerchief due to this and my tendency to sometimes choose my words unwisely). Anywho, the protagonist's ongoing effort to resolve his "identity crises" (a term coincidentally coined by Erik Erikson) was illuminated allegorically via his struggle to determine if his profound "fulfillment of self" came from his characteristic expectorate release itself or from the inner impulse and freedom to do it. It is indeed a classic... and a profound philosophical point unlikely to be resolved in our lifetimes. I think the underfed brain angle is sound... particularly if addressing it brings relief. I've not had scientific carotid ultrasound measure... but if one makes examination of much of my life one is likely to conclude that perhaps "that boy's brain ain't gettin' 'nuf oxeegen". There are other more minute things that could be at play... anything from electrolyte imbalances, reactive hypoglycemia (said to be more common in POTS), neurotransmitter adjustments as response to physiological aspects of the condition (or tied to it's cause or presentation)... to the interplay between chronic situationally inappropriate stimulation of a "fight of flight" response and the related memory & behavioral responses in the brain (confusing imprints of threat & other emotions). To withstand the onslaught of inappropriate sensations, one kind of has to detach from oneself. Derealization/depersonalization can relate to "trauma processing" as well, which can be an aspect of the illness (and it's debilitation), can relate to circumstances of its cause, or might allude to an existing sensitivity exacerbated by these things (such as if one has earlier trauma & dissociation/protective response history). I agree, isolation tends to feed it too. Actual isolation... as well as virtual isolation since few others are likely to relate well to the condition (even if they are sympathetic). Ironically, for me my strongest moments of relief from the detached feelings are when I am on the verge of passing out from low BP and I get a "bell ringing sensation like in a cartoon", and during one of my few panic or "moment of doom" sensations. Unfortunately one is intensely unpleasant and frightening, while the other is far far worse. At the end of it all... one might just become an adrenaline junkie of sorts, due to frequent inappropriate catecholamine & related responses. Then by contrast, other experiences are unfulfilling at that low level. It would be nice to have some acknowledgment of this symptom in official POTS descriptions. I think it is quite common and understandable to be timid with aspects that interact with the psychological realm, and having "official" recognition could at least be comforting if not informative for diagnosis.

If you mean a "spacey" sort of disconnection feeling, kind of half-there half-conscious half-real... then count me in. I'm not certain of the cause... I have a few angles on it for my case. Is that the sort of thing you mean?

This would probably count as "paresthesia". Seems to have so many possible causes from various conditions to medications. I think in the context of POTS one would figure generally low blood flow (and localized shortages) could be a culprit, but as others have said it can be wise to keep an eye on it and consider testing for other possibilities... including some that could be POTS causers like peripheral neuropathies if there are indications in that direction.

I've had my BP go a bit too high as well, though in my case I think it was Ibuprofen adding to blood volume on top of everything else. Fludrocortisone, salt & water intake all work together so it might take a consistent approach & modest adjustment across all three to find a good steady helpful state for you. I go more modest & steady with the salt & water when taking fludro compared to when I'm not. I like it for that, since I don't have to pound the water as much (and am not urinating as often)... but if not sweating it out it can build a bit too much. Potassium intake tends to trigger aldosterone release in order to lower it (assuming you are not low). Aldosterone tells kidneys to dump potassium and retain sodium. Aldosterone is what the "mineralocorticoid" side of fludrocortisone is mimicking... so a sudden increase in K intake can be compounding with fludro on salt/water reuptake in the kidneys. A slow release K might be ideal if you are going low due to steady influence of fludro. A blood test is ideal way to tell this. Otherwise, small doses at a time is probably wise if you decide to take regular K. Of course, electrolyte drinks like Gatorade will have it too. I use my weight scale as a judgment of my hydration status... water weight shows up pretty well (and usually confirms how hydrated I "feel"). That can be handy, along with watching BP regularly of course.

Toga, Toga, Toga... There sure is a simmering desire to party amongst this crew... even if it is a pity party! It is inspirational. I do hope you are able to get some assistance from the docs and that the tests get back to you with favorable results. It is lousy when life throws such a barrage at you. I wish you well.

I suppose electrolyte imbalance of some sort could make one more prone to this. It could tie in to breaking from meds for testing, like Pat alludes to. I guess one would be sure to supplement water with a stable supply with your electrolyte drinks of choice... and if possible spot check electrolytes with a blood test (perhaps your testing is including this already?).