erik

Hmm. Valproate may be a DNA hypomethylating drug... reportedly it can act as such inside neurons where at least some others don't... cancer targeted hypomethylators might miss this mark unfortunately. I've no idea if it has affinity for these NETenesian Islands, tho! I guess lab tests can be done to determine that though. I don't know if feverfew's content has that trait... if so, I guess it might link things. I guess it acts on GABA too. Some background references here: Altered Sympathetic Nervous Reactivity and Norepinephrine Transporter Expression in Patients With Postural Tachycardia Syndrome Which mentions underactive NET in a sample of POTS patients. The neuronal noradrenaline transporter, anxiety and cardiovascular disease Which mentions "hypermethylation of CpG islands in the NET gene promoter region" and "Panic disorder commonly coexists with essential hypertension and the postural tachycardia syndrome". Here is an interesting use of intentional NET reduction: Norepinephrine Transporter Inhibition Prevents Tilt-Induced Pre-Syncope For those with peripheral denervations or other things that by themselves would just make you faint when you stand up, I suppose this indicates that NET reduction could act as a partial compensation? They might cure their NCS and become POTS and at least keep conscious more often... though now suffering a different fate.

"Valsalva Manoeuvres in the Dark"... weren't they big in the 80's? Does listening to them help? Also forgot Clonidine. Probably should have been up there with beta and alpha-beta blockers in terms of being "direct" opposition. It tricks the body into thinking there is more adrenaline/noradrenaline present than there is, hopefully making it reduce production. This relates to the "adrenaline surge" dumped into the blood... may or may not relate to anxiety trigger chemically and probably not with sympathetic vs. parasympathetic balance (that is the neural side of ANS regulation, rather than the hormonal side of things). It's on various lists for POTS, especially H-POTS. Wise to counteract something by preventing it's release in the first place... As Mack's Mom points out the ultimate/ideal way to do that is skew the darn ANS back into a better balanced realm (rather than just fighting each specific bad signal it puts out). It doesn't happen for everyone, and as she says it can be rough, but the SSRI & SNRI side of POTS treatments can sometimes work that magic. Many to choose from, some could be more tolerable than others and difficulty starting them is not too uncommon, dysautonomia or not. Please keep us posted. I certainly hope something can get you relief.

Cool beans. Sounds like a relatively easy fix to a really complicated disorder! We need all of that we can get. It is really encouraging that after removal of the blockage, things apparently healed up enough for improvement or permanent remission or whatever. If that hadn't happened this theory might have been perfectly valid but looked like a failure (by this method of testing at least). Always relieved to hear mention of neurological things being able to restore themselves. Sure hope this theory holds up.

One thing, since it triggers the kidney to hold salt & dump potassium (just like fludrocortisone does) just keep an eye over time that electrolytes don't drift out of balance. They won't necessarily do this, but they can. Specifically potassium might drift too low. When I went on fludro, my doc had me do a blood test or two over the months to see how I responded. If you go low, I think you just supplement potassium and it should come back into range.

I'm not sure. If the problem is in one sort of body function, one receptor type (the sweat related one), it seems to imply something more specific than a generalized acetylcholine shortage. It seems a generalized acetylcholine shortage ought to show up with many separate symptoms since that neurotransmitter is active all over the place (and will mess some key things... generally in the parasympathetic side of things, though sweat glands ironically are a rare exception on the sympathetic side using acetylcholine). Certainly some meds have so called "anti-cholinergic" side effects so check if something is suppressing or blocking acetylcholine somewhere accidentally on you as an explanation. I suppose specific troubles like neuropathy of the nerves to the sweat glands, or auto-immune attack against the sweat gland receptors (like can happen to the salivary receptors in Sjogrens... not sure if sweat glands are prone to that), or whatever else might be a possibility? Or something is otherwise "modulating" or antagonizing those receptors? I'm certainly no neurologist, just speculator and spectator! I don't know if there are documented deficiency conditions, like poor absorption, dietary shortage, missing enzyme or whatever. There is mention of potential benefit from supplementation. I don't know how plausible the claims are or what quantities would be involved.

Heat intolerance is one of my deals too. At one point I wondered if I had seasonal allergies... yes, to the summer! My season of renewal is fall... suddenly I can think clearly again and get active. I can have very quick reactions to heat... like feeling fine outside in cold then having my mind cloud over after entering a heated building. Brings on physical fatigue too for me. I've been intrigued by some exercise physiology approaches, like the "cold hand" dealio or the crazy exercise suits that help keep core temp lower. Healthy folks have serious fatigue response to "overtemp" conditions... perhaps my thermostat's upper limit is set too low... like below my normal body temperature sometimes! I've had exceptions to this too. Very rare times when it felt good to go out in strong heat and immerse in it. I think that was a window of what most folks experience. It seemed to correlate with with my body's metabolic state. My body seems to do various things a lot better when I can get into a "run lean" mode internally... not starving but lean, like a two-stroke engine! Basically the same state I have to get into in order hold a long slow sustained weight loss. These functions (metabolism regulation and temperature stuff) happen to intersect in the hypothalamus and related stuff ANS stuff. I love this description here: Oh reeeeeaaaalllly? Ya' don't say!

My eyes get nasty red at times. I think allergy eye reactions are said to be characteristically itchy. Is the MCAD red-eye also itchy? Mine aren't, just red (and a little dry) usually kind of progressively worse... then nasty looking at night.

I know I went long time in the dark. Makes one wonder how many fellow patients are undiagnosed or misdiagnosed... "out there", left behind in treacherous medicine-land... wandering, starving, lonely, confused... or trembling in a POW camp somewhere where they blast "It's all in your head" on the loudspeakers 24/7. We should air drop some salt packets and pro-POTS propaganda leaflets. "Leave no patient behind" -- Autonomic-Forces credo.

I've wondered if I have gone "from one type of POTS to another" myself. I've never been "diagnosed" into any sub category though! The POTS subtypes are theoretical too. Thankfully, they introduce a few extra measurable signs to play with and research like from this article: I also wonder what happens to a person with POTS, if you then develop regular old "essential hypertension"? Might you look like a different sub-type? Also, one can have more wild dysautonomic "behaviors" than the typical POTS thing. Some people have dysautonomias that include BP fluxuations all over the map. A generalized dysautonomia. One last angle, it is reported of POTS patients that "They often have a vigorous pressor response to the Valsalva maneuver, with an exaggerated blood pressure recovery and overshoot both before and after release." Even more than in regular folk, we are characterized by an overreaction to this maneuver, which one can accidentally trigger. Maybe one can even be overly sensitive to triggering it too, who knows.

I forgot to mention "alpha beta" blockers. I guess technically that is blocking more of the adrenaline. That could go either way... in the CNS realm though I'm not sure what that implies... alpha-agonists are semi-stimulating. Seems touchy but I think it's recommended for H-POTS???

Directly countering adrenaline impact is conventionally beta-blockade. I think a beta blocker like Propranolol is leaned toward, since it is non-selective and can block CNS activity (presumably what cascades into the anxiety). Probably you're already up on that side of things, but what Rama said about second beta blocker is interesting. I know barbiturates have brief mention in POTS treatment (phenobarbitol). It requires even more care than benzos, but maybe it's a silver bullet? Would qualudes be another possibility. These may be "different" enough to not just be "stronger benzos" in their effect... I happen to have lecithin in my "regime". Hard to say if it's doing much. I've tried choline biterate for brief periods of time (I don't know if eating these actually results in changes to the body where it counts). I can vaguely say it might have been mildly anxiety-relieving overall. So was piracetam (kind of a different axis, AMPA)... very very mildly anxiolytic. Sleeping with head elevated was specifically helpful when I had a period of supine anxiety (maybe loosely like your situation but milder). I also felt like cortisol or some hormonal thing was in the picture. Certainly, be sure any conventional medical factors like endocrine disorders aren't in the picture. For upping acetylcholine one can consider "reuptake" tampering things like Mestinon (or Tachy has mentioned Huperzine-A in the past). Looking at acetylcholine from the other side, the receptors... one might unconventionally consider stuff there. Acetylcholine, IIRC, tends to activate muscarinic and nicotinic receptors. I happen to take a muscarinic agonist... but it's just targeted to my saliva glands! Maybe something down those lines might help counter specific sympathetic activity (by upping the parasymptathetic that opposes it)? However, I don't know if any of that comes up in the CNS... perhaps just the ANS peripheral stuff? Something nicotinic might enter the game there... but not sure. Does nicotine relax folks that aren't already on a nicotine cycle? Probably better not to start that cycle. Other things might be options like from the an anticonvulsant and mood stabilizing genera, carbamazepine or something. Most traditional anti-depressants are also anxiety reducers. Some TCA or TeCAs might do that and also happen to have cholinergic action (perhaps opposite of what you want with lecethin, though). Buspirone is used instead of benzos by some... but takes time to work like most of these here. Neuroleptics can be considered, whether or not there is a thought disturbance to begin with. SOMA (an opioid muscle relaxer) was very mildly anxiolytic for me... I think opioids can generally be so (again a doc must cautiously go off label here). The NMDA axis is not often medically contemplated, but antagonists tend to up anxiety and agonists calm. Cycloserine might help, but that would be off-label or research trial sort of thing.

Awesome to see specifics! Is the muscle-pump effect of moving about specifically helpful? If so, would a device to promote circulation be able to help (avoiding the exertion)? There are such devices for rehab purposes that might stimulate that pumping effect a bit. +++ I hold my breath instinctively some times. Is that similar to the old bag trick?

Could the fact that the symptoms are atypical be a clue that the treatment approach might need to be adjusted from that for standard POTS to more of a customized general dysautonomia? Your anxiety & breathing troubles are associated more with sitting rather than standing... whereas the typical presentation in POTS is to be relieved by going supine. I think you need an autonomic expert to give a fresh look. Applying the standard presumptions about POTS mechanisms might be a mistake here... the generalized dysautonomia complicates things. I'm afraid I don't know much about how to get doctors attention promptly... I've just taken a slow progress approach but you need someone to revise your treatment plan pronto. On the Benadryl, there are others here that get relief from anti-histamines either with or without a known explanation. Maybe the fact that it helps you can spawn some thoughts for additional treatment options? I don't have any profound words of wisdom but I know the pain of watching a life crumble and having those that should support you fall away or end up piling on instead. It was like waking up in a demented horror film and helplessly knowing what was coming. I pray that they can come around to understanding your diagnosis properly and gain insight & strength so as to contribute positively to this difficult situation. The treatment and support is not yet up to par, but at least you have a diagnosis. A debilitation such as this is akin to traumatic experience... perhaps people need help "processing" it and being able to get from a hurtful state (from denial or overload or inability to handle their pain) to one where they can see what is really going on and how to help you. In the mean time, plenty of folks here can relate. I don't know a concrete next step... could there be a more specialized autonomic clinic you could get to?

Just want to second Erika's points. I think this is dead on. I agree the natural emotional toll/burden is inevitable and often timed at the worst moments when our bodies are soo off kilter from the physical assaults. The docs have got to keep after the autonomic stuff, and maybe something like chronic illness counseling could help, especially if it were done as a family thing where a counselor assisted both you and the family to all contribute productively to the situation. A psychologist seeing the POTS & dysautonomia diagnoses should not be out to replace them with a psychosomatic explanation, but simply to help with the inevitable challenges that come with it.

This sounds horrible. As best I can imagine, you are being hit with severe anxiety both physiological and situational (either of which is more than bad enough), but also with direct shots to an emotional pain center in the brain (or at least the "response" part). The docs have to keep looking for something... I am not sure what it takes to convince a neurologist to consider it, but simple-partial seizure might be part of the picture here. Obviously I'm not a doc or in a position really know the best approach but have the docs given this a consideration? This is from a kids site, but it has an eye catching phrase given how much POTS/dysautonomia can rapidly tamper with our cerebral blood flow: It seems like several things could be lowering your seizure threshold... overlayed with spotty blood flow from the dysautonomia. Sometimes infection can be involved with seizures. While benzos tend to suppress generalized seizures, they can lower threshold as they wear off (and also don't tend to address simple partial seizures as well). There are different meds that are said to have better luck against that sort of seizure. Sometimes they can't see a seizure on EEG (especially the simple-partial sort) and they just try the meds to see if they help... or I guess some places will try more specialized scanning.

It is amazing. Maybe some docs in training should "intern" here on the forum... to learn a few things! Or for CME

I use some diet software for food + meds + exercise (it allows custom foods, which is where my meds + supplements are). I'll be adding & removing things in my "regimen" all the time and hoping to spot any effect. I periodically update a topic list with symptoms as well as anything else to chat with my doc about but not daily, though I keep old versions. I do spot checks of BP as well as poor-mans-tilts quite often (especially if something might have changed)... those sometimes have some symptoms tagged to them though they're pretty redundant/standard. If I notice a change, I review memory and logs of this stuff in hopes of finding a contributing factor. My symptoms flux a lot anyway so it's a challenge to draw many conclusions except for mostly obvious stuff... but sometimes I get some intuitive feel from having monitored all this. I should make note of temperature. Heat turns out to be a big factor for me.

That is terrific that something has brought him some relief! Gotta figure he will be pretty worn out but hopefully in a good way.

I quit drinking for quite a while... 'till a few weeks ago. I've been in a mostly good period POTS-symptoms-wise and it did not derail me. I did have to "drain the gecko" repeatedly which kept me rather busy (of course I made sure to re-hydrate)! Like with caffeine or (extra protein for that matter), I make sure water intake is good if I drink alcohol, which helps but is also inconvenient. I have not found it to be an instant POTS aggravator, and a modest intake can be kind of calming. I can't tell if it directly counters any POTS stuff for me... maybe when my symptoms are in a certain pattern it can (like the more tremulous side of things)? I tend to be more "fueled" by it than "sedated", for whatever reason. For example, so long as my metabolism is already in a carb friendly mode... it fits right in and fuels me. If I am in "carb becomes bloat/fat" mode, then its going to make me a slug and give me a stressed out feeling. On an "emotional axis" it just pushes me further in whatever direction I'm already going. Alcohol is one of those really complicated substances with tons of apparent effects (sugar-like fuel, adrenal stimulation, GABA agonist, NMDA antag, toxic metabolites, diuretic, etc.). Looking at what it is said to do, it seems it would be touchy with POTS except for the GABA effect (which might make sense to isolate instead). From some vague indications it seems an NMDA agonist would be a better fit than an antagonist too (but who knows), yet alcohol is very mild on that front (maybe cycloserine will come up in trials?). I don't know whether it results from excessive quantities or prolonged moderate use, but you probably know alcohol can be a source of POTS causing peripheral neuropathy... so significant regular use is probably a no-no.

I thought it was cardio EP's that do the TTT... that is pretty bizarre (but encouraging in a way). Sheesh, that is a lot of stress on the system and hitting you right where it counts and when you're already down... suffer the TT then drain you of blood... etc. Quite an ordeal... no wonder you are sapped. Hope you regain some strength & balance soon... and that the digestion can heal up with that treatment. I am not familiar with that side of things, been lucky so far. I wonder if taking the blood samples at that moment is going to give some extra insight... like a stress test?

Rama, it would be great if you have come upon something even more useful than you had thought! If nothing else, it is fun to explore these things. Hmm, third spacing is interesting. I do recall a Mythbusters episode where they tested the effects of "dehydrating" oneself onto the third rail! It was a fun one. I think they say pooling problems are generally associated with POTS... that does kind of support the other side of the leaky vein notion. There are so many different "compartments" (various vascular, intercell, intracell, mitochondrial, third spacing, etc.) and overlaid forces on it all (acid-base balances, hydrostatic pressures/osmotic-oncotic gradients, little pumps & permeability modulators, physical structures, temperature, etc.). Hard to picture it all in overview. Some folks suspect Endothelium defects for some key things in other disorders... even suspect in "essential hypertension". Another angle here: If albumin accounts for 80% of oncotic pressure (anti-leak pressure, if you will)... then what accounts for the other 20%. What if there is a deficiency (either in quantity OR effect/potency) in that other 20%? Might albumin then naturally get ramped up to compensate for that as best it can? What happens if this compensation effort helps a bit, but can't attain a balance (homeostasis) or can only do so intermittently? Even if it can compensate lots of the time, wouldn't whatever feedback mechanism triggered the compensation effort be stuck in "on" most of the time... or at least more often than in normals? Is that a potential pathology of persistent physiological bias toward dehydration... and we are swimming against that steady stream (literally at times keeping up but yet always lagging. It "feels" that way subjectively.

Hmm... brain sludge. I can relate. Have had days when the hamsters just didn't want to spin their wheels... and it feels different than when things are active but fleeting, or when one is "detached" from one's own thoughts... or when memory is there but cognition isn't, or miami-vice-versa. In the spirit of theorizing: They say with things like fainting, sometimes the body as a whole still has plenty of blood pressure, flow, contents, etc. yet the brain's supply gets constricted. A local effect. Like parts of the body might overreact to too much blood (or a specific component like CO2 or whatever) and end up swinging way too far the other way. So if there were an underlying "localized hyperreactive" reason for the brain to be underfed to begin with (a dysregulation)... raising overall blood supply/pressure might not overcome it, but could end up feeding/exaggerating the problem instead of your brain. Or on the other hand, you could be getting better. If things have had shoddy supply for a while, some slow restoration might be needed. Some things could be working better and revealing another problem area or just tuning to the new working environment. Like sometimes as you start learning about a topic, you newly realize the vastness of what you don't know... and feel stupider, ever though you're actually smarter! I know with fludro I was sensitive to even modest dose adjustments (and also kept my salt intake steady since it "amplifies" salt's effect). What is the "active ingredient" in licorice that is related to the desired effect? Does it vary much? Some herbal suppliers do chemically analyze their product so as to stabilize/document a suspected/advertised active ingredient. Is that an option here? And watch for "additive" effect from other things, salt or whatever else.

A little deprivation makes me "tired but wired" like thankful... I do think there is more heart edginess (palpy + tachy) in that case... and I get a little "fast & loose" thinking wise (and wordy like last couple days). So the palpy/tachy side of POTS gets exacerbated for me, but the BP stability might actually improve modestly. Maybe I get "adrenerized" or something... stimulated but with an empty feeling (like how too much coffee gives me that "going nowhere quickly" feeling & thinking Though in the past I've have had the waking up in panic phases, as well as myoclonic stuff for a while which has subsided to mild tremulousness... lately, I tend to sleep pretty undisturbed. However, deep restorative sleep is elusive for some reason (like lissy mentions).

I take zinc every couple days for a couple months now (it's 50mg or 333% of RDA though I didn't pick a dosage just bought it on sale)... and I've got a D/Calcium/Miscellaneous pill with 7mg zinc in it that I tend to take daily. Adding these to my intake does happen to correlate with me feeling better for longer lately, but other key factors like added fludro + cooler weather overshadow that time span.If taking a tally, Broken_Shell mentioned having some High-A measures too. (Hope she's hangin' in there lately.) It also seems like albumin is one of those things that might vary (or just tests wierd) because we are so often supine... and the fluid pressures take time to adjust. I've kind of wondered if I'm properly hydrated for laying down, but dehydrated for standing up... and being supine so much makes the body tune longer term stuff (like protein levels) too much to the supine volumes. Or... one reference mentions that: "Albumin is crucial in the maintenance of oncotic pressure in the blood. That is to say, it keeps the fluid from leaking out into the tissues." Would folks with "leaky veins" tend to have regulatory push to increase albumin to try to compensate or oppose the leakiness (a.k.a. oncotic pressure regulation to compensate for an imbalance)? I've heard it said POTSies have leaky veins! Anyone else have "leaky veins" ? So is the body's means of regulating that particular pressure mostly accomplished by balancing the albumin vs. water proportion? What did that other site say, Albumin accounts for 80% of this pressure? So is this a "motive" behind dehydrating the body... to reduce water/increase albumin so as to increase oncotic pressure and "stop the leak"???

Ouch does kind of sum it up. Good to turn to more supportive circles rather than let it drain you further. We're certainly here for you. I sometimes look at these irrational responses from family as being other people's limits getting overloaded. Meaning, they can be protecting themselves from things they cannot handle, a situation pushes some deep fear/pain button for them, or the picture makes a continued relationship with you look like a lose-lose. That's not always the case, but sometimes stuff like that can go on. One highly speculative "perspective" is that your mom has the profound yet subconscious sense that she has failed because her daughter faces such difficulty and pain in life. Digesting that sort of thing is not in everyone's "emotional vocabulary". Neither the feeling nor the response need be rational and need not even emerge as a tangible thought or feeling for her... yet it can fuel "avoidant" or other non-productive response just the same. I'm no mother, nor am I likely to become one... but I think the "I failed as a mom" subconscious drive/anxiety is one of the biggies in this world. Then again, "withholding" support or communication is kind of the staple of passive-aggressive or narcissistic personalities... shall we take up a collection and perhaps get your Mom the psychological counseling that she needs???