Newbie here - if very high bp unchangable with position, does this rule out dysautonomia?

[Weary]

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..
 

[Weary]

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.

[Weary]

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.

[Weary]

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).