erik

So far, I guess fludrocortisone has been best fit. It helps me to stave off near-fainting and allows a sane water/salt intake to suffice. Second place, NuVigil which has been handy for bringing a little wakeful focus rather than micro-napping 50 times a day. It also brings my pulse up slightly which helps with supine bradycardia. BB isn't good fit for me... low dose propranolol didn't hurt or help much.

Cool. I wish him the best in progress & recovery.

Yes, exactly! That's the theory I've heard described... the norepinephrine "spillover" out of the nerves can be the source of higher blood levels (a normal process, but on overdrive in this case) and eventually the nerves might sputter out. I sometimes get near crashes that recover and even drive my BP temporarily high, before an eventual crash out. I don't know if the nerves actually run out of supply or if the ANS eventually gives up/recalibrates, but I've heard the "depletion" theory mentioned. I'm not sure if that is "officially" part of POTS or if it implies NMH instead but I do have a POTS diagnosis from an autonomic aware cardio. I can see it as OH (especially a theoretical "delayed OH" which is not a standard concept) plus NMH too, as Jana mentions... although it's not just typical OH of course (meaning not from a simple cause). The article I was reading happened to be about "borderline low" cases and diagnostic meaning of tetany in areas that were deprived of blood circulation. I guess the combination can induce localized tetany. The article was less about full tetany and more about potentially related ongoing fatigue & weakness issues.

I really don't think it's correct that the HR needs to stay up indefinitely, just that it not be an early blip that goes away within a minute or two (which can happen in normals). Like Julie says, you can have both POTS & NMH diagnoses and from what I recall seeing in terms of sample graphs it would show a significant HR increase sustained at least past a few minutes followed by an eventual crash. This happens to be my pattern! Things get beri beri bad after about 10 to 15 minutes of standing still. I feel "I must lay down now", I sweat, shake, yawn, tingle, anxiety grows, all increasing until lightheadedness fades toward unconsciousness. Basically a "textbook" progression of sympathetic nervous stimulation trying harder and harder to offset whatever is failing, until the point it gives out and BP crashes suddenly. I vaguely recall reading one doc that figured that crash was out there for anyone with POTS, it's just a matter of an individual's time to reach it. That would make sense if compensatory sympathetic overdrive reaches an eventual point of neuronal norepinephrine depletion. There is room for docs to disagree, but perhaps you can ask this cardio to reconsider his requirement for some sort of super stamina in the face of autonomic dysfunction. Doesn't seem right and I certainly don't think it is a "universal" opinion on the matter. If he is arguing for OH/OI/NMH instead of POTS, maybe there is leeway there, but I think he needs to be pressed to explain the interpretation further. Maybe take the raw results of your Tilt Table Torture to another doc or two for review if it comes down to it (thereby avoiding pushing yourself past the brink again). I happened to be reading an article lately about Magnesium deficiency and relation to some people's assorted CFS symptoms. It happened to involve a special form of tetany (less obvious than yours in this case). It also mentions that adrenergic overstimulation depletes Mg stores. I wonder if this was involved for you?

I would not think it associated with respiratory muscles specifically, but always keep in mind that electrolyte imbalance can cause weakness (and lesser cousins fatigue, nausea, etc.) and is probably more common occurrence with POTS (from both treatments & condition). I'm guessing these were already checked for you, but just want mention this "fundamental".

Cool. If one want's to be well but isn't, then one should want to test sick. It can be helpful to getting well which is a great goal. I'll toast to that!

Needing lots of water seems typical with POTS. I assumed that POTS w/high urine output implied tons of clear urine (definitely the case for me but maybe that is incorrect assumption??? If I'm getting the point correctly, you produce high-volume yet with concentrated-looking-color most of the time (and with some extreme occurrences too). That seems like a clue worth looking at to me. Maybe if you didn't have the polyuria thinning it out you'd have an extreme urine color ( http://urinecolors.com/ )? The only thing I've personally bumped in to, reading wise, is some forms of anemia. Some forms can involve chronic excess of blood cells excreted in urine (a normal process, but done to excess in this case) which results in deeper color (and maybe some orange/red extremes too). In general, anemia can push some POTS-like symptoms too (hmm, more than a few similarities here): http://www.ehealthmd.com/library/anemia/anm_symptoms.html Just a thought. I would generally expect some other indicators (kidney/urine measures, etc.) to have come up in your prior testing... but who knows. My only "experience" with anemia was considering it (and tons of other things) when I was solving my own case (since the symptoms are so POTS-like and generally "nonspecific"). Besides normal vitamin effects, I've only had (much) color to my urine if I go deeply dehydrated or when I pushed my fludrocortisone dose super high. Have you ever managed to treat the polyuria?

Really great news. Fingers crossed.

First, be sure to give yourself full credit for what you do accomplish. Chances are you deserve a gold (or sodium) medal already! You're among an elite group of champions here. Some skinny, some fat, a few passed out track-side after running the course backward in a brain fog haze... but each giving it 110%... even when "extra effort" means thoroughly relaxing oneself (in the face of an oft overstimulated system)! I suppose we've got general impediments to weight loss like fatigue, exercise-intolerance or whatever else tends to plague us. Should also screen for other/related conditions like thyroid/adrenal stuff or depression... and of course med side-effects. But beyond all that, it seems plausible that an autonomic dysfunction could entail disruption of any number of key "low level" metabolic things. Maybe that could skew us chronically one way or the other, just like some of our bodies get mis-calibrated for temperature. Consider how many different things come together via the hypothalamus (interconnecting, informing & empowering the autonomic nervous, central nervous & endocrine systems). I wouldn't know specific suspects or what is realistic to consider, but the notion seems reasonable and I can ramble about some of it! One thing comes to mind that is mentioned in research for dysautonomias. We tend to show relative-hypoglycemic response (an unusually rapid drop in blood glucose). This seems to support the notion that at least one very key metabolic response is getting goofed for some of us. Not only might this undermine the body's energy supply at inopportune moments, but it seems that coordination and cascading of other key responses that are not as easily measured or understood could just as well be thrown off. If glucose chronically drops more rapidly than in "normals", it kind of implies that the conversion of fat into glucose is "blunted" in an ongoing or ill-timed manner. On the other hand, "sympathetic stimulation" which many of us get too much of, is generally associated with freeing up energy stores. But who knows, maybe chronic over-stimulation leads to desensitization to this signal for some (like in the "fat-burning" adrenergic receptors)? Obviously I'm just speculating (perhaps unrealistic or misguided notions here).

It's an interesting point. I've also heard concern expressed over the possibility that the fatigue in CFS is "appropriate fatigue", meaning it is meant to protect the body from damage by altering behavior... like the fatigue one gets by pushing physical limits of muscles, enduring starvation, etc. For example, if there is an underlying condition (akin to a mitochondrial dysfunction) then ignoring or subverting the fatigue without first correcting the underlying problem is asking for trouble. On the other hand, I personally have tried periods of extended rest, periods of cautious "pacing", and even extended intentional over-doing it. I also have tried "highly intuitive" (following feelings and body clues) as well as regimental approaches (ignoring body/mind inhibitions except for absolute limits... like fainting or low level physical weakness and actual danger). For me, my worst response and setback came from intentional extended rest. This is consistent with experiments specifically for POTS patients, despite my being a CFSy POTSie. I do best overall with ongoing exercise. I think for me there is a simple way to put it: I get benefit from resting, so long as I need it. Beyond that, rest gets oddly detrimental for me (in both "feeling" and physical ways). In order to "need rest", I have to first push activity in some way. This is normal, but my abilities/responses are sporadic (despite various strategies tried to date) so I can't keep this up or reach a "steady state" like healthy folks. Instead, I just cycle between slow nominal improvement vs. sliding (or crashing) phases. Maybe one day when there is an "exercise pill" we can solve this pickle. It will be more than just a "cheat" or "vanity tool" (the popular derision of such things)... perhaps it could be a legitimate treatment for some of us oddballs. Short of "finding & fixing" whatever is wrong with me, I don't have a realistic means of avoiding harm from rest while also avoiding harm from exercise. I would very gladly "cheat" in order to bring myself up to par with normal folks.

Certainly don't do one on yourself because it is both dangerous and useless (to diagnose anything you must perform lab measurements along the way, you can not simply judge looks or urine/weight changes... though perhaps one could use "taste test", he he . However, here's a great description of a water deprivation test (precise protocol varies): http://www.diabetesinsipidus.org/medical.htm It includes some indications of when not to perform the test (and of course a physician will be in a position to expand on these concerns for your specific case). They say not to do it when certain key measures/systems known to be out of range from the get go (adrenal, thyroid, hypovolemia, bad diabedes melitus, et. al.). It also mentions the need for continuous monitoring, both for safety and to ensure exogenous events do not foul results (including some things that we all tend to have either normally or especially as we dehydrate). I think the test can stop as soon as one crosses a diagnostic threshold so one might be lucky enough to confirm diagnosis before pushing to inconvenient or risky extreme. In either event, cautious trial use of DDAVP seems an alternative in cases where direct diagnostics aren't desired. Typical concerns of DDAVP use are avoiding hypertension (supine hypertension, sleeping hypertension, especially) and electrolyte derangement... not unlike other meds we tend to make use of (fludrocortisone, midodrine, etc.). I've had phases of significant urine dumping and it is always a huge component of weight changes for me... in fact I use my weight scale to confirm my intuitive sense of hydration level. Weighing myself is useless to assess fat loss except over long term (months) or in combination with my subjective sense of what was water and what was fat/muscle. I'll vary 5 lbs easily inside the day in normal circumstances (a little over 2 liters of water)... and up to 10 lbs (almost 4.5 liters) if something is changing or amiss. One can simplify and characterize ADH as being rather specific to "water retention signaling" whereas Aldosterone is more about sodium vs. potassium balance (albeit with significant water retention coming as a "side-effect" of sodium retention). Both are involved in more complicated interactions than that (for example with Renin/Angiotensin, hypothalamus, pituitary, adrenal glands, vascular tissues, etc.) as are all hormones, but those are the prime effects one is typically after (or measuring). Desmopressin (DDAVP) is the synthetic analog of ADH... fludrocortisone is essentially that of aldosterone (plus cortisol/glucocorticoid effect to a lesser extent). If you have "nephrogenic" D.I., then you might not have a shortage of ADH... just an underresponsiveness to it in the kidney. If you have pituitary problem, you might have an under-production of it. If you have hypothalamic trouble, the means of production might be fine but measuring the need might be amiss. Maybe brainstem issues can dysregulate the response too (or eratic BP/flow issues could miscalibrate ANS response). Other hormone imbalance might cascade to awkward ADH response indirectly. I would personally "reckon" that a dysautonomia could mysteriously/indirectly account for a D.I. effect, even without a classic D.I. cause too.

I'd love to hear more on POTS & Sjogren's relation! I've heard of POTS attributed to "nervous system" impact of Sjogren's, but perhaps it can have to do with kidney, vascular, or other impacts as well??? I don't personally know of any "official" analysis or study of this... beyond a doctor making this finding for a particular patient (diagnosed with Sjogren's after POTS). Would love to hear a bit about what docs come up with for you (as you see fit to share, of course . -------------------------------------------- Here are some links to consider as time permits. I'm sure they'll come up in a simple web search, but these seemed like some of the better bookmarks that I found personally useful: http://www.sjogrens.org/home/about-sjogrens-syndrome http://www.medicinenet.com/sjogrens_syndrome/article.htm http://www.nlm.nih.gov/medlineplus/sjogrenssyndrome.html This ANA test description mentions "Speckled" ANA pattern: http://www.labtestsonline.org/understandin...s/ana/test.html And probably good to compare & contrast with lupus since they're similar (and sometimes together): http://www.medicinenet.com/systemic_lupus/article.htm

Reportedly, it can be the cause of POTS for some folks... as a cause of neuropathy or denervation (which alters/disables the autonomic nervous system from responding properly/fully to orthostatic stress). I have met one person via discussion board who has POTS from Sjogrens and is now fully diagnosed & being directly treated. Sjogrens can ultimately be found to be part of Lupus or it can be solo. Sjogrens itself can involve attack on more than just moisture producing glands (so in a way it is multi-system attack, just like Lupus) so the distinction gets kind of fuzzy. In fact, Sjogrens need not start with an attack on moisture glands (saliva, tears, etc.) though of course it is characterized by that process. Both Sjogrens & Lupus are way more common for ladies (even higher female:male ratio than POTS, which is quite high). Also, both are typically "long diagnoses", meaning they tend to take many years to pin down with certainty. 7 yr average for Sjogrens, 10 yr average for Lupus, IIRC. In the mean time, as they progress, one can be losing nerve (or gland) function that may or may not recover later. Nonetheless, it seems some docs are not comfortable with direct treatment until things are quite clear diagnostically. This may have to do with a judgment call about treatment risk vs. disease risk which is obviously a complicated topic for both doc & patient. I don't know the in's & out's of treatment ("immune modifying agents" or whatever) but as a rheumy and Sjogren's expert takes a closer look at your case, I imagine you will become a resident expert! I'm not familiar with the complication of having "mixed diagnostic markers" like your tests are showing, except that in general it is a difficult & fuzzy diagnosis that involves a fair bit of "clinical judgment" so that means lab tests are never the end of the story. As always, it is probably a "mixed blessing" to have a likely underlying disease pinned down... it gives a more definitive route of treatment & potential recovery. One complication that I've come across (in my own investigation of Sjogren's) is that sympathetic nervous system "overactivation" itself can reportedly cause dryness in tears/saliva/etc. so maybe for some folks "just POTS" can be the source of those trademark Sjogrens signs (and of course plenty of "anti-cholinergic" side-effects of medications can do this as well). I don't have Sjogren's diagnosis, but I take one simple med that is typically for Sjogrens, which is called Evoxac. It is an M3 muscarinic agonist... which means it directly triggers the saliva glands to do their thing (I haven't noticed much tear increase but do like the increased salivation).

I first noticed my "senior moments" as a senior in high school! I do have sudden brain flatulence issues, but not constantly. Those seem to come in waves. In the old days I'd just say something idiotic then catch myself right away (so I spent a lot of time being silent . Went through a phase of locking keys in car and stuff like that. Other than personal frustration/embarrassment, those things have proven pretty harmless overall. I hope they stay that way for you. I think it is most likely they will stay within the nuisance realm. However, for me other abilities faded away more... inattention and mental fatigue became key problems (or at least increased drastically). I think something akin to "spacial" working memory or visualization virtually disappeared. Have scootched through life mostly on prior skills since then, since full functionality is pretty intermittent. I had put in early effort with work & study as a young kid before things really fell apart so I did have a base to work with. There is a chance that managing medical side of things as best you can will minimize the brain fog issues. On the other hand, sometimes meds can have or contribute these troubles a side-effect so be on the lookout for that too. I guess one just has to keep up all the basics like hydration, steady nutrition, rest/sleep, etc. and be extra diligent about important stuff (like counting your children a couple times when going from place to place to be sure you don't leave one behind). Cut yourself some slack on the little things rather than letting those compound into real frustration. Probably hard to do since one gets self-critical and vigilant to make up for failings, but it seems one has to do so cautiously and be able to laugh away some tension where appropriate. Oh yeah, one of my funny "rolling short term memory" lapses was when I dropped one of my pills. I said to myself, "ok I'll pick it up and take it in a second, after I have these couple others". Then I promptly forgot the whole thing until the next day when I noticed it on the ground and realized what had happened. It was a pill to help with my mental focus

The few things I've heard of LDN are that although it is an opioid blocker (antagonist), the low dose approach is theorized to minimally & temporarily block opioids so as to prompt the body to increase it's natural production slightly overall. Opioids are not simply pain related, some are apparently regulatory of other processes in the body. As others have mentioned, LDN is also credited with giving a "normalizing" or "boosting" effect to the body's immune system. I might be mistaken, but I believe those that have reported luck with it were mostly finding reduction in fatigue sorts of symptoms. Not sure if official studies have yet demonstrated this for other conditions. Almost certain it has yet to be studied in POTS. I personally don't think there is much to go by in terms of guessing how likely it is to help or hurt with POTS, so I'm hesitant to dismiss it and hesitant to get too excited about it. Seems about as likely to help with POTS as with other conditions that some folks report success with... so maybe in the end it will help for some POTSies. http://www.lowdosenaltrexone.org/ I've definitely felt healthier overall when taking a mild opioid (Soma) so I'd be personally curious if something like LDN could do similar for me if it does give a slight indirect boost to endogenous opioid production.

If you like bubbles and can afford it I guess Dom Peridone is not a bad way to go. You must have good taste & insurance. My coverage tops out at Cold Duck, which doesn't impress the ladies much. I've had the least fatigue from Zima but I guess it was pulled from z market.

Is one determined to be a strep carrier simply by a "culture" (like swab & grow test), or some other process? Does it basically mean that you have strep but it isn't in a florid form with obvious symptoms?

I've not personally had a hyper reaction. When I first started it, about a week or two in as I reached target .1 dose, I had several horrid days where I had a solid headache and could hardly get out of bed from sudden physical, mental & emotional depletion. This passed after a few days and so far it has not repeated, despite stopping & starting fludro a couple times and also pushing dose to .2 or .3 (even .35 briefly) scoping out a balance between benefit & side-effect. I suspect the higher doses have contributed to fatigue for me, but I never know if it is a med or just my condition so best I can do is experiment and guess.

I too get phases of flu-like stuff that stops well short of a full flu. In the past, I just wrote it off as getting a cold/flu and my body fighting it off really well (not sure if that happens or makes sense, but that was my excuse/explanation). Looking back, I now figure most of those times were POTS/CFS symptoms. I have a CFSie POTS... or a POTSie CFS. Flu-like symptoms without a flu are characteristic of CFS... whereas more nerve-like pain would lean toward fibro. One can kind of take their pick based on where the symptoms lean since the rest of the "symptom cluster" is virtually identical. If you get an actual flu, the POTS symptoms would likely step up too... so it's always possible that sometimes one is just getting sick on top of having POTS, even when it is the POTS symptoms that get the worst and most noticeable. Since lots of symptoms of "getting sick" are side-effect of the body's own immune response, it makes one wonder if (appropriate or inappropriate) immune reactions are involved even if it isn't a simple cold/flu. It seems plenty have considered "lingering or subacute infection" for these slippery conditions like CFS. I don't know how well those theories have held up.

I've had plenty of what I'd call a "panic attack without panic"... I've also had 1 or two with panic but typically I'm overly calm (and/or sleepy) instead. Also have had waves of intense terror feelings that are very brief and different from a panic attack feeling. The panic attack style is a slow "endlessly building" predominantly "body feeling" with the mind as a helpless passenger (which can spiral into a panic feeling if not used to it). My "moments of terror" are brief (seconds long) but the intensity more than makes up for that... they feel like a "glimpse of ****" (not being melodramatic, just honest). I also can relate to fluctuations of various things minute to minute as you describe, usually mild but sometimes not. Mostly, they are "mild" because I tune them out (disconnect from myself) and they are within "my normal" (ever since I was a kid). However, I now believe if a normal person suddenly had to experience "my normal" range, they'd go screaming for help. Not sure precisely what causes or can minimize these things. I've tried tactics of keeping everything as steady as possible (nutrients, meds, behaviors, etc.) and that is probably wise but falls short. The trapped feeling is nasty. I can just say that I can relate and it's a frustrating circumstance.

I'm no expert but have been hunting adrenal testing info for some time now. The various tests I've read of are: a) One time blood sampling (usually cortisol level measured in early AM at expected peak). Longer duration urinary samples (24 or 48 hr urinary samples, typically measuring cortisol). c) Saliva cortisol sampling (usually looking for deviation from expected intraday pattern, high AM tapering to low midnight) d) ACTH stimulation test (provocative test, scoping out HPA) e) Insulin tolerance test (provocative test, scoping out HPA) If there are others, I'd appreciate hearing about them too. My layman's impressions of these are: One time sampling would tend to pick up major malfunctions (such as full blown addisons or cushings, or significantly damaged adrenals) but misses subtle or transient problems. The longer duration urinary sampling gets more "sensitive" to less obvious problems but is still looking for more "generalized" and consistent problems. The saliva testing can pick up some more specific hormone level problems, like dips in the day or "reverse" patterns like low in AM and higher later (which can be subtle clues to things but is tricky to interpret). The ACTH stimulation is actively probing the system and scoping out it's response, and particularly helps distinguish between origin of a problem (adrenal vs. pituitary vs. hypothalamus) albeit via rather subtle clues such as looking for a normal but slightly delayed response. I guess the Insulin Tolerance Test is rather similar (just pushing in a different way of course), but I'm not sure what it is better or worse at spotting. I read in an overview article that the Insulin Tolerance Test is the "gold standard" for probing the HPA-axis, but haven't found too many details on it or explanation of specifically what it can spot better than ACTH stim can.

Is good music a rare occurrence at a Grammy awards ceremony? (rhetorical question The US technical criteria for "rare" is 200,000 from what I remember (NIH cutoff I think), which might make POTS "not rare" given the half-million estimate, but statistics have several ways of being slippery. Some specific causes of POTS are definitely "rare" by that standard, such as NET deficiency... which I've seen listed in published agendas for discussion on "rare disease research" conventions (by participants from Vanderbilt, as one might guess).

Hmm, not sure but I'm wondering why he would want to give his car diarrhea?

For me stuff does not all go away with laying down. I think that either whatever is defective has impact regardless of position (though it obviously shows up most prominently under orthostatic stress) and/or the chronic/cumulative dysregulation also projects into longer term ill effects. Like you and others, the cognitive challenges most often persist for me as well. If I go lightheaded, crouching or laying down can help that... but there are times when I am tired for no reason, and feel tired even laying down... as odd as it sounds, it has even felt tiring to try to rest! Heat is one of the things that zaps me both physically & mentally. I think focusing on the trademark pulse dysregulation in POTS can be misleading if taken to be the sum of the condition. I sometimes have thick "fog" or a light "fog" but in my case it is most common that I have a sort of fatigability. If I focus on something, I will get tired within 10 minutes or so... to the point that I have to stop and rest or sometimes go into a nap, regardless of time of day. This cognitive analog to "exercise intolerance" may or may not be typical POTS... I had a head injury some time ago and those can cause diffuse damage which while it may not directly impede the brain, is said to make it have to work harder to do its thing and results in mental fatigue.

Very likely this is Low Dose Naltrexone (LDN). Definitely a fascinating topic.