Weary

ok thanks. and camel milk is postively delicious.

Am reading this thread with great interest. although i'v e not been diagnosed with Hyperandrenergic pots (havent' had testing), if i do have POTS, its the closest, though i suspect its not the perfect label. Anyway, keep getting spikes in bp and so very interested in how to control them. I"m also getting the chest discomfort i think you are describiong. What is the LR you mention? do you mean maybe ringers solution? any idea why you think that helped? most of the time, mine is high, but the time course of changes over 24 hours is odd and then i get spikes. So i've been measuring for quite a while, and my lowest is mid afternoon, ussually after a nap if i can manage it - and for me this is low, but i can get it down all the way to 133/79. But then it starts to climb in evening and before i go to sleep i'm at 163/90 and sometimes rises from there. olddly on saturday, my adreneline stimulation seemed to vanish in an instant- as i posted yesterda thats wh i was able to come back on the list. But then overnight last night, seems to have come back with a vengenace, could not sleep, and bp up today. i have no idea this time what triggered either the one day relief, or the rebound. i of course try to prevent with cr9ises, but if i had to go out today, i'd be in a crisist. in crisis, i go up to 220/120. am interested in taking clonidine on an as needed basis like the poster above- but that has the reputation for producing huge rebound when one goes off. Can ou comment on if that happens for you? so ou take x dosage as a rescue and then just that once? what happens to our bp over the next 3 days? tomorrow am tring out a new internist. I"m guessing i will be in crisis, but am trying not to be. when they see me in hypternsive crisis, all the do is get flustered and can't think past that and there is so much i need to begin discussing with a new interneist. ok, sorry for rambling. another concrete question: since youre doing well with the calcium channel blocker, did you stop taking the other 3? (so far i'm still delaying taking anything. i want autonomic testing first, and i want to see what happens if only i can get 6 staight weeks of sleep, though i don't know how to make that happen.

hi pistol - thanks. I don't want to hijack this thread but curious about the potatos and tomatos; i have been unable to eat potatos since early childhood since cause GI issues (and tomatos the hives). Alas for me, it's the breakdown product of the protein, or appears to be, so i cannot have cheeae, butter, yogurt, etc - all of them do the same thing How is your daughter with camel milk? there are so man different proteins in milk on can be allergic to; often one develops an allerg to more than one of the proteins with time.

I also have an appt with allergist/immunologist to ask to be evaluated for MCAS. it's tricky since unless there's a glaring increase in serum tryptase, many will just dismiss the whole thing. I also appeared to be allergic to milk as a young child with chronic diarrhea for 4 years then grew out if it (apparntly not uncommon) , but developed what appears to be a milk allergy (not lactose) a few years back and when i reluctantly gave up all diary, the worst of the GI symptoms improved. HOwever, i seem to ge more and more food allergies (e.g. all things coconut). in addition, I have been very senstive to aged foods for years ever since i first got sick. I had deduced it was tyramines (soy sauce would near kill me), but wonder now if was also or even instead (but don't think so) histamines all along. Perhaps involved, since apparntl when as kid i would eat a tomato my lips would swll up. They thought "allergy to tomato" but apparentl a histamine/mast cell issue can do that as well. i've also had dermatographia since age 11 do you react also to bannana and/or latex? if i'm remembering correctly, those plus avocado may cross react, but its been a while since i looked it at. i used to eat avocodo fine- then one day it caused severe reflex and can't eat anymore. Bannnas give me heart palpitations. i also somtimes get the throat swelliing thing, and sometimes severe itching with a variety of foods and chemicals at least your reaction occurre d withink 15 minutes. that will mean both they can test for IgE and docs will believe you. My dairy allergy symptoms often don't show up until the evening. some people so oh, so that's an IgG reaction, but I actually do not think so. One theory i've got is i'm having an IgE reaction to some peptide and it takes a few hours before my body breaks it down to that peptide. Another reason i think that is that its not just cow dairy for me its also: goat, sheep, bufallo, and camel. includes butter by the way. Can you eat butter? between the "allergies" to milk and coconut and the tyramine/shistamine reactions to aged foods including nuts, lentils etc., i am running out of stuff to eat. some of the tyrmamine/histamine reactions raise my bp and controbute to hypertensive crisis. i've tried thinking about what else might make me so intolerant of so many things - list does not seeem very long- mast cell issues, MCSD, adrenal issues - any others? any changes to bp with the foods? one thing doesn't make sense for me is my bp does not go down even though sometimes i think i've had anaplyatic type responses how do you do with h1 blockers and/or h2 blockers? H1 blockers make my bp and palpitations worse - so for me not consisitent with mast cell. On the other hand, I think H2 blockers help tremendously - but give me a stomach ache not to mention rebo0und so am trying not to take them. I lood forward to hearing your expeirences at allergist. my appt isn't until sept - they were secheuding like 4 months out for new patients.

eating a trigger for me too - heart will start pounding and it may lead to the full blown spell. Maybe try giving up the claritin. i have to look it up but i think claritin might inhibit mao-a. If you have any problems with that, like i do, then that will add to the burden. Thinks i've tried is oddly to play scrabble online when heart starts pounding after a meal. seems to engage my parasympathetic system- not sure why. For me, worse at night - dinner - even though no longer biggest meal of my day. have you seen if breathing to engage parasympathetic nervous system helps? i have not had much luck with those - and they can make it worse for me but others swear by it. One thing that does help me is if i can induce a yawning jag. sometimes they happen spontaneously, last a ridiculous long time (like half an hour) then at the end my heart has gone back to normal - not pounding and no chest pressure. btw, some of symptoms too may be esophageol spasms which also are quite distressing.

@ancy - what's a cardiac service dog?? 😀 (i've been considering ig treatment, so read thru this post. sorry to hear hasn't seemed to help people)

hi. yes, that's the book. the chapter is called something like one last case study. it may even be the very last chapter. how did u know you had intercranial hypertension btw?

Hey kiddo- you seem to smart for an 18 year old, so kuddos to you. You diagnosed it soon enough that maybe it can all just go away. I'm not so sure this is unrelated to the bipolar you were also diagnosed with. Before you go 100 percent down the big pharma conventional route, maybe touch base with people who will do things like order a comprensive amino acid urine test -see if you can figure out what's really going on. Maybe vegan will work for you, but maybe something else like that will work for you instead or in addtion. Anyway, if you want an older person to talk to, message me.

In a hurry how, so will try to respond more another time. i've been chronically sick for decades now so have experienced so many different aspects of how this affects social situations. I remember in the very beginning I didn't tell anyone i was sick, and then alot later , I couldn't get anyone to believe I was sick (!) and then alot later again, did indeed lose most of my friends and acquintances as i had less in common with them (from this illness) and now med maintence consumes me 24/7 so... I like lainy's comments since i and everyone eventually discovers, whether you have chronic illness or not, that one person, one friend, even one spouse, cannot be all things to us and all the things a person needs to feel secure, vindicated, satisfied, comfortable, connected and so on. So friend X is great for hearing complaints because she has alot of empathy but is not histrionic, brother Y is great when i need advice on cars or feel like gushing over his new kitten, cousin Z is great when i want to take a few moments to forget it all and resconstruct the family tree for fun, discussion forum Q is great when I need people who REALLY get it. but one thing super notable to me in your message is what you quote above. that it's only your husband and your daugher. I can't help to give my perspective on that in hopes it may help a bit. Since youre so steeped in it, and take it for granted, do you realize that to others do you know how amazing it is that you HAVE a husband and daughter and they ahve stuck by you? now of course, there's someone out there who will find it amazing and enviable that i have a emphathetic friend X and a entertaining brother Y and so on - very hard to compare apples an oranges. So i find what works is to ditch the comparison and just think alot about how glad and cool it is for the things you do have. Doesn't mean you can't want more, nor look for more, but it helps alot to not feel like something is missing, and not to feel lonely or bad. so if it were me, i think every day i'd think it is so cool i have this husband. and so cool i have this daugher. incidentally, i've made a couople of genuine friends , one very good friend, from email alone since being sick (who are also sick), so i think that's huge. ok, i'll stop rambling. these things are so important and so hard to put into words. When my mother died, O lost alot of friends too and that had nothing to do with chronic illness. sometimes in times of deepest needs w unfortunately have to see that what appeared to be permanant social structures really were not and they have to change with the changing needs and demands. (with illness by the way, i find i lost all my friends who turn out to have been depressives! didn't bother me that they were depressives, but they appear to be the ones unable to handle my profound illness. brings them down or somesthing. plus i got very tiresome overexaggerated "oh i'm so sorry". i mean geez, give it a rest, i'm at deaths door every single day and that doesn't help- just talk matter of factly on the stuff i want to talk about...And with others you thought they were part of your Permanant Social Structure , you find out really they just liked having people they could invite to dinner parties, so those are gone when you can't go to dinner parties any more, and others are only friends if you live in the same town - everyone discovers these things, but with us of course we really push this to the max)

@hugr - Thanks for elaborating. These are all fascinating issues. The details still aren't jiving. For instance, I think then you are saying that in ordinary folk how have higb blood pressure from high adreniline, beta blockers will not increase their adreneline. Whereas, those with autdysfunction might get higher adreniline with beta blocckers because will cause an increased demand for blood flow to brain, which was the whole reason they had high adreniiline to start with. If that's the idea (intersting by the way), then there are two things i can think of that seem to run counter. One is that everyones levels of catecholamines in urine and serum go up on beta blockers. This seems to suggest it is increasing adreneline in everyone. I think i now know why it does this, as i'm typing this and will explain below. And the other counterevidence is that its contraindicated in pheocromyocytoma. in pheo, the cause of the excess adreneline is secretion by a tumor - nothing to do with a need for increased adreneline to keep blood flowing to head. so in this population, beta blockers should not then increase adreniline, by your hyptothesis yet the contraindicaiton to taking them suggests it does (unless there's a different reason its contraindicated). so now to resolve, thinking out loud, what happens in every person regardless of condition, is that the beta blockers block the effects of adreneline rather than the adreneline itself. That's way people feel calmer, bp lower, heart rate lower - adreneline can't act on the receptors to produce its usual fight or flight stuff. ok, so now, what happens is adreneline also goes UP in everyone because the body senses through its feedback loops that adreneline is not doing its expected thing, so pumps out more adreneline. that's why adreneline levels go up in testing blood and urine on everyone on beta blockers. Most things are going to follow from this way it works but am getting tired of typing. but if you or anyone else is interested in futher hashing this out I can continue another time. I have though talked myself out of wanting to try beta blockers. does not seem like the right drug when youre already running high in adreneline, even if it appears to control the bp. but of course i always think differently than everyone else about meds, perhaps becasue they always make me so sick. ok, thanks for your help on all of this. has been useful.

Been reading everyone's posts, and curious what routes people took to find docs who treat their dysuatomia. Many of you seem to be hooked in to one or more pretty d*** useful docs. Did you use the docs recoomnded on this list? did you go to a specialized center? just got lucky that your pre existing docs were knowlegable? I'm not having much luck and am weighing my options. Both an EP cardio and a regular cardio say they don't treat autodysfunction, but the regular cardio willing to give me any standard big pharma med i wanted pretty much (dragging my feet on trying labeletol because i do so bacly with meds and no one will be here to pick up the pieces if i have a bad reaction). Tried a new primary doc - and she was awful , so am not going to keep her. Basically she said, i don't know anything about dysautonomia but your bp is out of control, so let's use mega doses of beta blockers. all my attempts to tell her that mega doses of anything are a death sentance for me just got quizzical looks. I may try anyway, but i want a doc who at least says, lets try to get it lower and then we will have the luxury of dong some autonomic tests etc - but nope, can't get that. oh and the endo ws only interested in ruling out pheo, and she wasn't even thorough at that, and the neuro has zero interest in it, despite being quite intellogent (not all of my docs are intelligent). (and don't even get me started on the looks that mast cell disorders gets). Especially if its not garden variety pots, it seems especially problematic to find someone willing to work on it with a patient. Each visit so taxing, I need to give this some thought before i gear up to try again. (only my retina guy is outstanding and he'll be testing me soon to see if any of my eye vessels have been damaged by the attacks i get) so back to wondering how did all of you find your docs that youre happy with? EDIT: I should add I especially need help pronto with cardiac autonomic dysfunction

Not sure if this will be relevent to what your asking about head specifically, but your saying it actually fogged the car made me think of it. in the last case study of the mast cell book (towards the end, maybe even the last chapter) by affin or whatever his name is, he discussed having a patient who apparently had visible steam coming off of him. that lead affin to search the literature and see what might generate heat to such a large degree. I don't think his answers are particularly correct, but if you like ready everyting even remotely related, you might enjoy having a look at that. I would think pituatary issues could sure mimim autonomic dysfunction by the way.

Would it make sense then if you have very high blood pressure but no longer getting tachycardia to take an alpha blocker instead and not a combined alpha beta blocker? Thanks for that comment - is helpful. but Why then are pure beta blockers used in hypertension at all? many people with hypertension, and not just mediated by dysautonomia, have it because of increased sympathetic tone and increased catecholamines; in fact, its often for these suspected causes that beta blockers are given for hypertension- otherwise, the drugs of choice these days involve blocking the angiotensin receptor instead. Along related lines, is this part of why bet blockers can't be used in pheocromocytoma. ARen't alpha agonists used in pheo? Not sure then why alpha ANTagonists are helpful for bp w/o pheo but in dysautonomia?

read thru the replies- but here's how the dermatographia may be related. apparently high sensitive mast cells are very common. most people who have them lead perfectly healthy normal spanned etc lives. As I did at first, and you too. But then if a person is unlucky enough to get exposed to environmental toxins, its a bad combo when mast cells overreact. So the same evntl stressors do not hurt someone w/o the mast cell predisposition, and someone with the mast cell predisposition but w/o the envt stressors are all fine. But the enviromental assault then makes the mast cells go ballistic which leads to actual illness. In my case, the dental work i was allergic to and remains in my mouth, in your case maybe the mold or perhaps a chronic virus. ( I do not know how my recurrent virus plays a role, but herpes viruses, including e.g. ebv like yorus, are opportunistic attackers).

And finally @pistol - quickly- thanks for the comments and input. Incidentally on yawning, its no longer believed yawning is for increasing oxygen. currently favored theory involves cooling the brain. And also read a very cool, so to speak, paper, on how can turn up in pathological stuff including dysautomia where there is aproblem with temperature regulation. What did you find that you say helped your palipitations? also, what's an example of listening to your body? i think of mine practically 24 7 since very hard to distract from it. but you said no listening to palpiations, but to your body so curious if you have an example.

Granted, pheos are rare and I'm guessing I'll probably turn up negative. At that point we'll re-evaluate. In your case, it sounds like pheos and paragangliomas have been ruled out. But if you're worried about things like baroreflex failure, mast cell activation, and similar disorders, it might be beneficial to get to a doctor associated with a full autonomic center that does the comprehensive autonomic testing - not just tilt table - if you're able. The larger centers can do other tests - like the cold pressor test, valsalva, QSART, and others - that can help diagnose things like baroreflex failure and other dysautonomias besides POTS, as well as diagnose hypovolemic POTS, hyperPOTS, etc. They'll also usually also run a ton of other tests for mast cell activation syndrome, autoimmune disorders, some endocrine disorders, paraneoplastic syndromes, and other diseases that can either mimic or cause dysautonomia/POTS. As i mentioned, I would not say it was a careful job to rule it out, but still don't think its that, perhaps because of the nunber of years of tyramine intolerance. Yes have been considering going to a dysautomia center. i'm a rotten patient among other reasons though - e.g. I will refuse a tilt table test (i have recrrent vertigo), and request it be simulated instead with me just on my own volition standing up- that kind of stuff gets rigid doctors apoplectic. I asked for blood panel for paraneoplastic autoantibodies that affect neural functioning and did get that; negative (except for general ANA noted, but i guess not ANNA), but have my doubts on the lab since busy satellite lab and blood makes way too many stops and likely not properly frozen. I do by the way have an AI disease with mildly high ANA, so that could have lead to the dysautonimia, but those who have POTS from the AI rheumatic illness do not have my other symptoms that go along with it - the crazy revved up stuff, the childhood dermatographia, the medication intolerance, the intolrance of ANYTHING out of the ordinary, chemical intolerances, the tyramine intolerance etc etc. So that's why was suspecting mast cell or something like it as the earliest predisposing factor - but i bet anything i turn up negative on the testing. My autonomic testing also included heart rate variability, which was abnormal, but I had different results each time it was tested as to which systems were dominant. Once I got results like yours, two other times I got totally different results. I chalk this up to the fact that before, during, and after some of my attacks or adrenaline surges, the sympathetic is probably dominant, but there's probably a lot of swinging back and forth at other times. So HRV isn't particularly helpful or accurate for me diagnostically. On the app, I have gotten different results each time also. e.g. one time hrv low, one time in normal range. But every single time, the full picture when all measures considered together is that things were quite bad. This makes sense when one thinks about it- there should be constant attempting to shift things, so its an interesting moment to moment check of what's going on. I may delete th app though because its a downer to find out i'm at deaths door and doing serious damage to my body according to the app. If it turns out I don't have pheo, and we're going back to my original POTs/HyperPOTS diagnosis, then here are some other avenues we're considering: - Familial dysautonomia. I don't have this; it's usually more severe and diagnosed in childhood, I think. Plus, my genetic tests were negative. But tyramine intolerance is a hallmark of the disorder, and I've taken the info from "Familial Dysautonomia Now" to my doc,. We've agreed that some of the treatments might be helpful to me anyway. I had come across all that when searching for tyramine intolerance. i remember reading the article from the guy who said he cut down on ER crisis visits in the kids by having them be on a tyramine free/restricted diet. I don't have it either. Have you had any luck with the treatments? my understanding is he found stuff that increases expression of the gene that was underperforming in these kids. so seems like a long shot those supplements will increase MAO-A in those w/o this particular genetic defect, but who knows. the supplements were harmless enough (well, uncless your like me and everything gives dyspaghia and other things). - Genetic disorders like MAO deficiency and COMT mutation. I just had genetic testing done, and don't believe I have either, but have to follow up with a geneticist to confirm that. I am very good with genetics, so if you have your exome data, i have access to somne databases that most people don't. would be happy to look for you (if physically able when you send them). I also don't have a comt or mao genetic deficit; however, i suspected that for some reason i might be mao-a deficient anyway and based on some urine testing (for biogenic amines), if i see the patternof the metabolites it indeed suggests that COMT is working just fine but MAO-A is not. So may be an added burden, but doubt its my entire cause (e.g. lets say i have tons of dopamine, perhaps there's just not enuf mao-A left over to break it and the tyramines down) - Lyme disease and co-infections. I have had it in the past (even without a tick bite/rash). I've met people with Lyme who have developed dysautonomia, and there are a couple people in my Lyme support groups that have tyramine intolerance and mast cell issues with the Babesia co-infection that resolved with treatment, apparently. So I might go through treatment for it again. I've ent my blood to IGeneX and so far no Lyme. However, a ubiome test i did on my skin found bartonella; i then asked a rheum to order some bartonella antibody testing which he did. came back negative but i hear it often does even with infection. Have been in a very big lyme area alot of the time. but i don't think its that...But interesting you have had lyme and you think was fully cleared. And very interesting they have tyramine intolerance!! If you can find out more about that, would be interested- i.e. what on earth the connection is. forgot to say when i had done reading about i think it was familial dysautomia, along with an article from the 60s or 70s on problems with tyrosine metabolism, i thought i had a huge piece of the puzzle. there are different ways the body has for breaking down tyrosine. but if the main way to do so is busted, it uses alternative pathways and those generate lots of tyramines apparently. plus, th earticle showed it lead to elevated liver enzymes in rats. On urine testing (through Amino Acid testing), my tyrosine is low yet we know my tyramine and dopamine are high. hmm. wondered if was having a tyrosine metabolism problem and convinced an inflexible liver doc (he sucked) to order a blood amino acid test. Tyrosine was normal, alas. However, i've since learned that its better to take the test after eating, where as i stupidly followed the instructions and took it fasting, so i'd like to re-order it. (i did also find on blood test i was low on taurine; that also is part of a big story but its too much to type). - Reactivated EBV. We actually know I have this. Not sure how much of my dysautonomia it could cause, but it's worth revisiting, anyway, in my opinion. I have a recrrent herpes virus as well, but in my case it does not appear to be EBV. its either zoster or hsv1 and its on both my head and my chest. my symptoms started with the rash of that virus (though not the tyramine intolerance which was years and years before the dysautonomia symptoms) ok i'm spent again, but want to finish- i also was wondering if i really have histamine and not tyramine intolerance, but so far i think not. too much to elaborate. I know about those auto anti body tests. here its hard to get them to hand me the blood so i can send to the lab so then i dropped the ball. I wouldnot say i am early in diagnositcs in the sense that i've been ill for years and years, but it did take a big change about 4-5 years ago and i guess all the docs i've been to is alot of blind alleys. But very doctored otu and don't know if i have the stamina to keep pursuing; am pretty weak at this point. very quick thing on ivig; i asked my doc not for ivig but for sub q ig. fewer side effects, much safer. after getting dicked around, he claimed he was submitting it to insurance, but it's been nearly one month and i've heard nothing. ive tried oral IGs but i also developed a milk allergy so its tricky. - Histamine intolerance, DAO deficiency, etc. Most of the tyramine foods I react to also have high levels of histamine, and this is something we actually haven't looked into. - CellTrend testing for alpha and beta adrenergic autoantibodies. Regarding IVIG: Before I developed tyramine sensitivity, my autonomic neuro tried to get me approved for IVIG twice, but my doctor wouldn't consider it until I'd failed pretty much every other dysautonomia treatment. Said he reserves it for cases that are very likely autoimmune in nature, and/or are resistant to other treatments, because of the risks and side effects, such as meningitis, severe migraines, blood clots, etc. I have never turned up positive for an autoimmune disorder, and I haven't turned up positive for small fiber neuropathy, either, so my insurance denied it twice. If I'm negative for pheo, we'll send bloodwork to CellTrend, and if that's positive, then we'll potentially be able to revisit the IVIG thing. I might also just do oral IgG supplements and/or transfer factor instead. There are a ton of threads on here regarding IVIG too, so if you want more info, try doing a search for IVIG in the forum. But don't give up - it sounds like you're still early in the diagnosis process? I was incredibly sick, bedridden for over a year at the beginning, and between doctors offices and hospital visits, was in a medical center of some sort getting poked and prodded and tested about 3x/week for that entire first year. I too am incredibly sensitive to meds - so much so that we start at a pediatric dose (and sometimes I half that!). But after awhile I had to just try things anyway, because I have found some helpful meds/supplements. And then I had a couple really good years. And even though I had a setback this January, I'm hopeful that I'm going to start improving again once we rule out (or in) pheo, because there are STILL more tests and treatments to try I guess i'll end with questions: if yours is not mast cell, what do you make of your high senstitivy to meds (just like me)? and what do you make of your elevated liver enzymes? HOw do you think both of these fit into the picture? I don't think they are coincidence.

To continue: (part II of III) nyway, I got worse this January. My BP got higher and the attacks of flushing, tachycardia, high BP, and adrenaline got more frequent and that's when I developed the tyramine intolerance. I am now being re-evaluated for pheo by an endocrinologist who specializes in pheos. Dio you actually turn red, or just feel like flushing? I assume youve been tested for carcinoid. I do not think i turn red but not completely sure. my serotonin is low on urine test, but its an alternative test, so not accepted by the mainstream (that one was an OAT test) Four years ago, they did blood and urine metanephrines, all of which were normal, but also did a CT of the adrenals, just to be sure. They pronounced pheo to be effectively ruled out at that time. My current endo says that, given my individual case, that wasn't thorough enough as it didn't account for paragangliomas. These tumors can exist anywhere from your head to your pelvis, and can secrete either metanephrines, or dopamine, or both. She says she's had some patients whose metanephrines and/or dopamine were only elevated intermittently but still had pheo or para. So in my case, she is wanting all levels checked several times - dopamine, VMA, metanephrines - and not just randomly but during my crises to get the most accurate picture of what my adrenaline and dopamine levels are doing at that time. I am supposed to do four separate urine tests! If any of those - dopamine, metanephrine, or VMA - are elevated, even 1x normal, she will have me to do an MIBG scan, and if nothing is seen, will have a full body PET scan as well. My blood levels of metenprhines, both normetenprhine, and metenphrine, were 1.5 times normal. This was in the ER but it was the symptoms bthat brought me to the ER so it wasn't from the "stress" of that. They took the blood tests when i was about an hour after the attack had mostly been over. My urine metenprhines, VMA, were both normal and one of the mentenprnines was even low. But i was not in an attack then. I n fact, with the attacks i could not leave the house so the only day i could do the urine test was on a good unusually calm day - possibly my norepinephrine had been completely finally been depleted then. I also have quesitns about the perservative issue. supposedly the CATs were normal too; but can't seem to find my test. But i've never had blood catecholamines and really would like to see that. Given on alternaive testing (again the OAT), my dopamine is high in urine, i would not be surprised if high in blood, but not showing up in conventional urine tests as done by crappy laboratories. I do know about the tumors that secrete only dopamine so theyre not picked up by the menphrnine test. The party line, which is think is not correct, is that these do not raise blood pressure. But that seems wroing because a sources of epineprhine (adreniline)is dopamine, so if youve got elevated dopamine, seems like your going to have more adreniline a the drop of a hat. I have not been scanned either. I could have pushed for it- but i'm trying to avoid radiation - a whole other story, so I did not. Since my tyramine intolerance has gone on so long and I really think was all launched by dental work i was allergic to, i'm guessing mine is neither pheo nor other tumor. One wrinkle though is my mother died of a neuroendocrine cancer... its awesome you have that endo who is willing then also to look for pituatary issues. I had such a bad endo i'm still furious. I better not get started describing what hapened. She also had an explanation for why my HR could be lower than usual in between attacks, too, and I guess t-wave abnormalities, palpitations, and some of my other, seemingly unrelated symptoms can be seen in pheos/paras as well according to some of my docs. If no pheo, she's going to test for other endocrine abnormalities (adrenal, pituitary, etc). I would love to hear the explanation of why hr is lower than usual between attacks (and i think intersting another thing we have in common); i was wondering for a while if its like peeople in good shape- i mean if youre heart runs over 100 some of the time, then body will compensate and bring down resting heart rate. makes sense, and i wonder if thats what she means - but i don't think its true for what happned in me. My heart rate dropped to the weird low 60s before i ever remember getting tachycardia. So if she had a different explanation, would be very curious to hear what it is. also interesting the other synmptoms can be seen in pheo- so maybe its all just same common endpoint- increased sympathetic tone for whatever cause can lead to the palpiations, t wave abnormalities etc. wil send this, and then finish in one final post..

Hi Pistol and Ks42 - let me first start by trying to address ks42's post. I won't remember them all, so what will try to do is to paste in her message here and respond point by point: I am tyramine intolerant also, though the tyramine intolerance didn't start until this past January, which is 4 years after I was diagnosed with dysautonomia. You can go to my profile page to read my story, so I won't re-post it here. But I'll add that I've always gotten hot flushes and prickly sensation right before an "attack" of high BP and racing heart. I do also have elevated liver enzymes, dermatographia, itching, random hives, food and chemical intolerances, weight loss, mouth sores, exercise intolerance, and a lot more. I'm constantly on edge with my adrenaline issues - I have to stay calm, in a quiet environment, otherwise my body gets overstimulated easily and I go into crisis. II have every single item on your list including ones that I didn't mention in my post. will read your story. It seems to me signficant that our symptoms overlap to that extent. I too have non-specific T-wave abnormality and tons of palpitations. My heart rate also started getting lower in between attacks of tachycardia, to the point where sometimes I am running in the 50's when resting, which isn't fun because 70's was my normal before I got sick. Because of the T-wave abnormalities and palpitations, I've had a nuclear stress test, yearly echocardiograms, two 48 hour holters, a 7 day holter, and a 30 day event monitor. All normal. They believe the abnormalities are due to excessive sympathetic tone. Interestingly, my docs refuse to pay attention to the non specific t wave abnormalities. I did wear a 24 hour moniter - and DID have an attack during the night when wearing it. Since i get more than one type attack (I think), it didn't fully capture everything. What it showed was during peak of attack, had something like 400 pvcs in the hour interval, and sinus tachycardia of about 125 bmp. There was not enough trisomy for them to be interested. Then when i got up after almost no sleep and was dizzy, i had one 60 second run of atrial tachycardia (a type of supraventricular tachycardia) and my heart beat was 143 bpm. My heart rate ranged from 63-143 in the 24 hour period, and all i did during that time was rest. No one was interested in the lability and said it was a good sign and that damaged hearts don't have such labile readings. The atrial tachy meant I could legitametly see an EP cardio, and since this guy reported to be really excellent, I went. He of course wants to see a 30 day recording, because that's what they do, and i scoffed at his agressive suggestion that they implant it! Anyway, have not done it. On the non specific t wave, the PA who worked with him checked all my EKGs i brought in as well as the one they took that day and said it was the same in all 3. didn't know but thought maybe was a result of the chronically high bp. But what's worse, they didn't really care about it. The ep cardio did agree I likely had an autonomic dysfunction but he treated neither that nor the very high bp. And that was that...(I think the one arhytmia was completly unrelated to what i have and just a bonus - its not uncommon and i think have genetic predisposition to that). I saw two mast cell specialists and it was determined I actually don't have mast cell - tested negative four times, even when I was super symptomatic. We also tried me on every mast cell protocol in the book, just to be sure, but they didn't help (I believe I too am sensitive to amines, but even non-amine drugs didn't work). Have your read -is it Affins popular book on it? Worth a read. I know mast cell activation disorder can be very hard to diagnose and most of time trypsin is negative and even often the urine markers they look for, especially given the handling requiements. I have not yet been to any mast cell specialist. at the moment , alli have is an allergy appt and I coudln't even get in til September! so you can see the frustrations. Question: if its not mast cell over reactivity, what do you make of the dermographia? Since i've had that since age 10 and was healthy (though some GI symptoms dating back to infancy and arguably related), i was thinking that perhaps i had the very common mast cell activation syndrome, and then i know exactly what happened in terms of chemical exposure that put it over the top and sent me on the downward spiral . I tried on my own the non amine H1 blockers - and did not helkp. in fact, the HI blockers (meclizine which i took before for vertigo, and hydroxizine which i asked for since i thought i did well with piperizines), makes my heart pound harder. In fact, that's how i ened up in the ER in November and made up some reason why I took the meclizine (I thought it would calm things down actually since in past made me sleepy. did make me sleepy- but made the heart worse and that night during the night needed ambulance) have your basophils ever been elevated? I caught them up after the dental work got me sick, but everyone ignored. would be curious to know at some point if you have any allergies to sulfonamide and some other things. Anyway, I got worse this January. My BP got higher and the attacks of flushing, tachycardia, high BP, and adrenaline got more frequent and that's when I developed the tyramine intolerance. i wonder if you had the tyramine intolerance before, but now your threshold has changed so more things putting you over the edge in a way that's noticible. I wonder if ive been sensitive to tyarmines for so long (granted by the way i'm not sure evryone would have figured it out and realized i was sensitive- docs wanted to give me clonidine instead), just what that means about my excitotory state and/or excitotoxins for a very long time. WE both have the elevated liver enzymes. I don't think this is a coincidence. What has been your thinking on them as it relates to all the possiblities we are discussing? Occurred as my earliest lasting symptom. (I also measure very high on oxidative stresss- not surprising). ok, i'm spent, so will continue on the rest of your very important stuff when i can, hopefully this weekend- so please don't go anywhere yet... thanks much folks!

Wow. I have much to respond to on these great comments. takes me a while cause sick etc. But quickly ks42 you sound so much like me and vice versa my jaw was dropping. More as soon as i can. need to read thru all carefully and so on. thanks.

Hi everyone. I'm the OP and thanks for all the comments and stories. On the mast cell, yes, i had seen other threads on this forum which ws one of the reasons I wanted to post here. Some were from 2011 though and the posters appear to have moved on (hopefully in a good way!). this morning my heart rate ws 60 lying down, and was 106 on standing. Whether it went back to normal on standing is hard to figure; was pretty labile. Note that the 60 resting i view as another symptom of dysautonomia since before this all started my resting heart rate was about 88, sometimes down to 82. does anyone else get a "hot flasth" or chills before heart starts to pound? another thing that bugs me is that I have palpiations near all the time, worse early am and pm, and the EKG now always says "non specific T wave abnormality", but that's not a class docs care about, so it gets ignored. yet i think it corrleates with some of the unpleaseant feelings in chest. I also feel like i have revved up feelings all the time - BUT oddly, i do so even when my heart rate is at 62, so that's not adreneline (though at time i do get "spells" that seem to be adreneline fueled with tachycardia and can last days and days) and I wonder what else is producing those feelings. On urine testing, I do have an excess of dopamine (and low serotonon) and beside smy tyramine intolerance, i also am intolerant of free gluimates (even glutamine), so perhaps "excitotoxin" at my does, but don't kow. Maybe high dopamine means body ready to produce excess adreneline from it at any stimulus. Weird though because I can't even have a simple lunch with someone - it gets me too revved up! Awful way to live. Think i mentioned I also get these yawning jags. I tend to feel better after them, though these days never get back to completly normal. I think that can go along with autodysfunction. there's still one more new bit of data wanted to mention; i'll end with it, so let me bring up anything else I wanted to discuss first. Have not seen a specialist in autonomic dysfunction. I have been to a zillion other docs and am so d*** doctored out. been two 2 neurologists, an EP cardiologist, a regular cardiologist, i also have a couple of rheumatolgists. Am getting a new GP, so may bring it all up again. Still don't understand a very weird symptom i get - which is electric type sensations in my head and/or chest every time I fall asleep for the first 2 or 3 hours a night. so that startles me up every 5 minutes, and also produces dreadful sensations in my head an chest. I think my dysautomia symptoms get worse after that the next day. So am curious about if anyone else gets that. And as before, curious if anyone else has an intolerance of tyramine containing foods. but even if its that - dysautomia (whether from mast cell, or autoimmune , or sleep disorder, recurrent herpes virus) , then seems to be a downer of news cause doesn't seem like there is much that can be done - just attempts to control the dangerous symptoms, but i do so badly on big pharma medicine. Anyone ever evaluate vagus nerve? Anyone ever had IVIG or sub q IG for dysautonomia? I'm still reluctant to try the beta blockers for bp. Since my heart is already down to 60, the beta blocker will make it lower. Plus my mother did very badly on a pure beta blocker- made her act drunk and not in a good way - more in crazed amanic way. Plus if i do have a mast cell disorder, beta blockers can basically kill you if you have an allergic reaction whilst on them. maybe i should try treating it as hyperandgrenergic pots, even if it isn't exactly that. Anyone have cyst on pineal gland? (I don't think i do unless missed by an MRI a few years ago, but i hear that too produces strange symtpoms and the rate amongst those with POTS is higher than general population; Its one of the listed comorbid conditions. ok, so here was the one bit of info. Been wanting to do heart rate variability testing for a while. my EP cardio does not offer it. Turns out there are apps that do and they apparently are pretty d*** good. Anywya, ran it a few times; got all the measurements they gave and interestingly, said that my autonomic nervous system was not able to control my cardiovascular system and that alternativ e hormone and another older system was attempting to do so. Certainly fit with my symptoms, even though i never gave them any symptoms. Also unexpectedly, it says that my sympathetic and parasympathetic are in balance and that BOTH were not working properly. That actually makes a lot of sesne- i had been expecting it to say my sympathetic was in overdrive and parasymphathetic not working, but fact they are both not working does fit in bettter with my synptoms - such as the low resting heart rate now, and the fact when i do the breathing excersises to engage the parasympathetic system, I get worse and heart pounds harder. Also suggest that beta blocker might not be a great idea, since its not really an overactive symptathetic system like i first thought (despite the elevated metenephrines in blood- when we looked at urine, that was LOW. )' alll seems like dysregulation rather than a steady elevation of one thing or another. (and of cours, lost ability to regulate blood pressure; although mine seems high all the time, theres a bigger change in readings than i think people usually get - its at least 35 points between the hours of 8am an 3pm in systolic and maybe 15 in diastolic. NO one cares about the heart rate variability data though, even though am getting reports on it that i'm in "breakdown" mode and health is in danger, or much else for that matter. Anyone else done heart rate variability (HRV) testing? Anyone found any doctor that uses this measure? ok, have to decide if will see the new gp sooner rather than later, or try to go to cardio again and ask for another 24 hour moniter (since symptoms have changed some since 6 months ago when done before) or search for a dysautonomia doctor, or try to move up my allergy appt (for mast cell ) - or just say h*** with it all...Staying alive shouldn't be this hard and i've been at this a very long time following so many d*** leads.

ok, thanks folks. May take me a while to respond - tired, sick, etc. That makes sense that dysautomia should be an umbrella term and should not require that only innapropariate responses to gravity be the sole criterion. Many docs, to the extent they buy into into dysautonomia at all, are familiar only with orthostatic bp changes - sometimes heart changes. I know the text book says 30bmp on arising, but in life its more complicated. If i change from side to side in bed and heart speeds up, does that "count". Or my heart might go up 25 beatsa minute with standing. or it may not go up at all with standing, but then soars when i start to walk, or soars when i brush my hair. in terms of hyperandrenergic pots, one thing i think may argue against it is I have gotten big "spells"/attacks while lying down. they don't reach quite as much a peak as when i'm stupid enough to get up when i have an especially bad "maybe i should call the ER" flare, but nonetless, lying down does not always make me normal (unless of course i'm in the hospital. Then, I like down, hr goes back to 100 and they say i'm fine - until of course i get up...then they had me rush back to bed and grabbed the portable ekg machine, but by then i had by lying down w/o moving and was fine again.... lately though, just as symptomatic lying down. so so many symptoms fit with MCAS the more i read. my worry now though is that my vessels (and nerves) are affected and wil get a storke or heart attack before I can find a treatment that works for me. I thikn i spin the roulette wheel every time my pressure goes to 220/110, not to mention the ongoing damage that is done with the overstimulation i have 24/7. i was looking through some old posts on here and so much makes sense. what is RAAS? I get so sick with meds that am so reluctant to try things. I also don't do well swallowing pills, so i crush things and mix with food/water etc. - and whether its that or just the drug itself, i can easily set off GI symptoms inclusing dysphagia and bad reflux and it lasts weeks. could not eg tolerate valtrex or acylovir - tried 4 times and destroyed my esohpagus in process (I even tried intranasal delivery, so it wasn't jsut that it was going down my gut.). i had a similar problem on tyring such a small dose of lauricidin. But that's all just for the past antivirals i tried. intolerance of meds i hear is common in MCAS. I tried a bit of Pepcid for an H2 blocker. I could not try tagamet becasue apparently it further depletes MAO-A and juding from my symtpoms of tyramineintolrance as well as some blood markers (biogenic amines) and pepcid is really the only safe one if you have that issue. But the only one that didn't have stuff i was allergic to was the one you had to swallow - they don't have a chewable. so crushed it - just a small amount - and gave me bad stomach/chest (esoohagus) pains; i didn't notice besides reducing acid later in the day, it also reduced my itching which i thought was interesting. finding an acceptable h1 blocker is tricky too. i have always reacted badly to benadyrl, so that's out and in looing up types i can see why i react badly to many which are basically amines. But i've always done well with piperizines (cyclizine for vertigo before they discontinued it), so serched for piperizine. got a doc to write a script for hydroxiine which is a first generation h1 blocker in the piperizine family. Took the most amzainggly small dose and 12 hours later got sleepy, which felt nice. But felt like it increased my heart palpitations. did read that H1 tends to decrease bp, so pehraps blocking H1 might increase my bp? I forget now the name of the second generation piperizine h1 blocker - so wanted to try that, but the d*** manufacturer discontinued the chewable. they kept the "quick melt" version and the liquid version, but both of these have ingredients I can't take! Tried bying some generic off amazon, but smells so strongly of some kind of aritficial cherry flavoring, i figure will make me sick, so have not tried. ok, so that's some things i've tried. intersted to hear from others who think mcas is the cause of their dysautonmia. and for the person whose distolic readings also go up - have you found anything that helps with it? and...anyone else intolerant of tyramine containing foods?

Hi. At wits end and beyond desperate. Have so many ysmptoms and so many things happened over the years I don't know where to begin. Dysautomia, mast cell activation syndrome, hyperandrenergic POTS, baro-reflex failure, disruptions to HPA axis, all seem to have overlaps with my symptoms, but I find these hard to tease apart (and forget about getting help from the many cardios, neuros, rheums, etc that I've seen). Question then starting with the high blood pressure that appears caused by excess symptathetic nervous system activation. So my blood metenephrines is 1.5 times normal, but its not a pheo. I feel overstimulated constantly, and have to avoid as much external stimulation as possible to not bring it over the edge and go in crisis. It has raised my bp considerably and with excaberations my bp last week reached 220/120 while in a docs office. Resting value ranges over course of day but not infrequently 180/100. Quick thing on heart rate. its very complicated. I do tend to get tachycardia (100-140) when I get up, and settles when idon't move. in fact, oddly, my hr now has dropped at rest to about 64 (my resting pre illness was about 82-89). So that has made me in past think maybe hyperandrenergic POTS - but = my bp does not change all that much, if at all, when I get up. Lying down or standing up, and it's super high. I do though have a negative correlation between hr and bp., so later in the day, like afternoon, my heart rate is higher and my bp is (relatively) lower- and I feel relatively beter as well. I have alot of symptoms that are consistent with MCAS - dermatographia, those elevated metenphrines, chemical sensitivities, now many foods have become intolerant (the chemicals set off an autoimmune disease) , swellings on my face, itching for no reason, a huge intolerance to fermented/age foods (these can set off a hypertensive crisis), chronic diarrhea, elevated liver enzymes, tons of weight loss (even w/o diarrhea), mouth sores, heat sensitivity, extreme fatigue, excercis intolerancethere are others. but because that high bp is largely stable with position changes, does this rule out dysautonmia? how can I find out more on baro reflex failure? another tidbit is things really started taking off after an apparent herpatic infection on chest and head. But there is just too much to tell and I can't explain it all. in fact, there is so much, that at this point it is too excessive to even tell doctors. and dspite keeping medical logs of everything and trying to keep lists of symypoms, it has become so complex I can't even keep track of it all. so will stick with that one question. Am I barking up the wrong tree for these excessive bps that do not change much with position changes? does this rule out auto dysfunction? should I be looking for some other cause of inappropriate symptathetic nervous system activation? any help appreciated. I'm really out of steam.