Weary

There was a discussion i think last week started on this topic that you might also be interested in.

What were your results?

Also curious if Dotson thought the lab was reliable, including with blood shipped overseas.

HI folks...Trying to keep a storm at bay but may not be able to stop it. When i get these storms, its greater than usual  andrenergic excess with dangerously high bps, palpitations, and feel awful. This one seems to have had initial trigger be food - most likely fish, possibly also camel milk (allergic to milk), and possibly even an item i was allergic to the day before and didn't realize was eating. So started with insomnia. Wide awake much of night even though no head zaps or interruptions, and noticed was super sound sensitive, more than usual. But didn't think I was in danger until....At 8am , they started jackhammering outside my windows and besides the noise, it blew major dust into the house. Had to scramble to shut 4 windows (not easy with my shoulders), still got grit in eyes. And the noise was unbearable - and a trigger for me has been low frequency sound. Low freq sound was the final straw back in november when lead to ambulance ride. Then the noise was on both side of the house at same time and could feel adreniline sruging with no way to stop it. Tried to stay calm but was not easy, got a little quiter, and did some of my tricks to lower bp and stuff -which did help enough that I thought could go safely outside.

Went out side. usually, i could go weeks without conversting with a sole, but as luck would have it, two pepole struck up conversations with me. Didn't realize how bad I was getting, but was really worse after each one. It was also really hot sunny and humid outside, and they are also doing work on the roads this summer, so very noisy.  Went to a store, but by then i'm super sound sensitive, there are trucks out for national night out and was just too noisy. Thought of going to a library but by then i didn't think i could safely drive to one, plus in my rush to get out of house, i was unable to prepare a snack.

So have come home. some of the workers are on lunch break so its not as noisy, but that will be over soon.

and when it rains it pours- the new docs office can't get their act straight and they keep trying to fax me medical records to my home phone, plus they keep calling and asking if I got the fax. So now ill unplug both the phone and the answering machine, which I often do anyway.  In an adreneline fueled state, I emailed the doc this morning and said I wanted to talk about the lab tests and let him know that despite the passage of 2 weeks from our first visit, I had yet to get a copy of the doc notes i requested, so he harassed the staff I guess, and hence theyre trying to fax me.

anyway, i guess i'm trying to distract myself now by writing this, but its just more adreneline fueled manifestations and not really helping anything. Can't do anything physical to "burn it off" since my heart already adversely affected and I have a low excercise tolerance for years.

These typically take days to wear off, so its not the harmless 15 min adreneline surge that some get. Just have to try to ride it out, and hope i don't cause any end organ damage to heart, brain, kidneys, or eyes, from the bp surges. I'm typically in a state of andrenergic excess and then things can escalate it to full blown crisis (like foods, h1 blockers i think, low frequence sounds, animated conversations)

just unplugged my phone as the idiots have the fax on auto redial  to my home land line.

im pretty good at keeping things from escalating, so will do my best, but may or may not work. Wish me luck...

@bombshell : Thanks for your thoughts. In general, my bp is too high, but not sure it co-occurs when the hr is low. So when i said it may be compensatory change from high bp, i was thinking in general, and not just at that specific time. (work has shown hr can go down with high bp- though since i also have adreniline excess, am surprised to see it. usually in that case, both hr and bp are up. still wonder if i'm in  a new stage. haven't had a 140 heart rate in a few months).

I like your idea  that excess nor adreneline leads to downregulated beta receptors. in a way, is consistent with view i've had that increased heart rate at other times led to compensatory change (the way it does in endurance athletes), but you have a slightly different twist on that.

my last thyroid check was in november in ER, but just TSH. They always suspect hyperhtyroid, given also how thin i am, but none of the markers show up, and do not have the trembly hands. Take tyhroid tests usually once a year. Amusing docs think they can get the big bucks for suspecting thyroid. yawn. when it turns out i don't have the 3 most common ailments, they just shrug and move on to the next simpler 15 minute patients.

@ pistol   So far, I cannot imagine having more differening views than anyone than you and I have! But its good for forums to have opposing perspectives and i think people benifit the most that way.

@dizzy tizzy How about one that's both an an alpha and beta blocker? Your is just beta. I remember when my mother was given propanolol (inderal) decades ago, she had very bad reactions to it. in her case, she went like drunk but in a bad way.  I wonder if it had long term consequences, but we never thought of that as possibly contributing. (years later she tried another beta-only blocker, and had similar reaction though never as bad as the inderal). How about just halving the dose or even less? maybe you need to find the sweet spot since you did well on it first couple of days. (I also seem to get adreniline surges during the night but i just don't know how to treat it. given my own and families reactions to meds, I keep thinking it will make me sicker)

@ Peter: what was the cause of the initial ventricular tachy; i'm surprised you survived that!

garden gal: what did you find out? with my IgG food testing, there was moderate reaction to egg yolks, egg white, and both components of wheat. My general igg levels to everything was quite low, so the increase for those foods didn't put me into the stratosphere. Since those are among the very few foods i can tolerate for other reasons, i didn't give them up. I"m not surprised body generates igg to the foods we eat the most of - expected actually. But was still very glad i did it- explore every avenue.  My case wasn't really responsible for much of the burden. Curious to hear your different experiences on it.

cool on the ige. haven't done it since required going out for a blood draw rather than an in home finger stick. Which panel did you use and what did you find? i suspect an ige allergy to at least two things and am thinkihng about testing.

OP: i'm a self hacker from way back, so please PM if you like. the two things you mentioned are quite easy to get w/o an MD.  Lab credibility and price are the two factors that become relevent.

ok, thanks much everyone! So i guess its not uncommon to develop low hr in addition to the tachy episodes. Guess its part of the disregulation rather than a compensatrory mechanism for high heart rate or high bp. Of course that's so hard to unravel and it could be all three - dysregulation, compensation for high heart rate, compensation for high blood pressure.  And any one person can have any combo of the 3 causes. So i guess not much help from the symptom beyond "stuff isn't working right"...

Also seems like there are "stages" to this, so wondering/predicting what will happen next.

(I also like at least one of the posters do not feel quite right when my heart rate is low for me). Could also be that "non specific T wave" abnormatilty which docs refuse to acknowledge. my chest feels funky when i have that- forget the type, something about depolarization.

next up is figuring out my  bizarre electrolytes and whether i'm having a kidney issue or pituatary issue from all this.

I wrote a long reply to this and just as I was about to hit send my iPod touch died and I lost the message.

Trying to re-create message quickly I have done many tests including 23 and me and full exome testing. If you do 23 and me or ancestry DNA.com what you want to do is download your raw data and run it through the website Promethease. While I find the 23 and me health website useless, there is  a lot of useful info from promethease and it is worth trying. 

 In my own case, identified to rare mutations using Exome testing that might be related. One of them was a mutation in a gene that has been linked to mast cell disorder but this particular mutation has not yet been reported as causing issues. The other one affects blood pressure and the  angiotensin system but it is too rare and has never been studied. In terms of common mutations that I was able to get from the regular testing e.g. 23 and me I have a very high chance of atrial fibrillation   so overall no smoking gun for me but it is definitely worth doing it is probably the best use of 100 bucks I can think of.  tread lightly though because with Exome testing  I did on unintentionally stumble on a rare mutation that will give me cancer. Rare mutations are very common by the way and everyone will have about a thousand of them in full exome testing, most of which have never been studies. I have been too sick with all this dysautonomia and related to see if i can prevent the cancer 

overall am a fan of knowledge so no regrets that i tested 

With the onset of my dysautonomia my heart rate dropped and it is now dropping again. So this morning im at a new low of 56 bpm while lying down. Havent gotten up yet to see standing rate. When i first got this, i had a resting  heart rate of a out 82 bpm sometimes higher  then one day blew me away when i saw hr of 64. I thought maybe hormone changes. The best of my docs at the time said of the drop  i"interesting" and the other idiots stupidly said still in the normal range.  LAter 62 bom became the norm and now under 60 , with 58 or 59 most mornings and today 56.

Dont know if direct consequence of dysautonomia, or perhaps reactive change to the very high bps and spikes or perhaps reactolive  to the tachy episodes i got - but have not had a big one in a few months now 

incidentally when  discussed  with a smart EP cardio that my 24 hour heart moniter showed back in dec 2017  a ramge of 63-146 all with zero excercise and exertion during the 24 hours, he said its good to have a reactive heart...

i dont know if i should tey to get another 24 hour moniter since alot has changed since december  one reason im reluctant is that one shows up things because had an attack while wearing it  if i dont get an attack this time dumb docs will say well its fine now (thats also why i dont want to repeat the blood metenephrines and have them say well your fine now)  i can also do a 30 day moniter  

anyone else have a falling heart rate or suggestions on how it fits in. 

Thanks. 

Thanks to the two folk that posted with minimally positive tests at CellTrend! That def helps some. I will try to ask around some more and get some more data on percent positives. 

Will be interested to gear what dr kem says about your case 

Will be curious to hear 

Is there something you would like to take now if theyd precribe it?

even if your autonomic tests when u finally get them give u the official diagnosis, i bet they still wont know if you should be restricting fluid 

i find myself not knowing either whether i should consume more fluids or less fluids, more sodium or not (cant go any lower). My low sg urine suggests i should lower fluid intqje but my high bloid sodium seems to suggest opposite. Last 3 weeks very low sodium intqke but that made sodium rise. I have high bo which climbs to hypertebsive crisis. So beats me eitherwhat to do. 

Incidentally im with tou that we have to figure this all out on our own  

hope the heart failure improves soon  

Was so concerned with getting the bloodtests i didnt have time to think about results...i wonder if an unexpected pattern has to do with dysautonomia.

my carbon dioxide was a little high overthe cutoff, my urine specific gravity was very low (diluted) even tho i did not drink much water at all, my sodium evel was in normal range but at very high end (despite last few weeksa having a very low salt intake) and potassium also in normal range but very low end. Both potassium and sodium pattern similar to what ive had last few years but a bit more extreme for the sodium 

So was wondering maybe its something like central diabetes insipidus as another manifestation of poir autonomic control altho i do not get up at night to urinate 

But perhaps all these things unrelated and the high carbon sioxide instead breathing issue and related to the heart symptoms or my poir nutrition status

(oddly despite the very dilute urine, i felt the volume was low)  

still waiting on aldosterone, ACE and lyme weatern blot 

my GGT was elevated as expected but as far as i know not related to the dysautonomia  

other markers of kidney functioning seem ok 

will be interesting to see if this new doc is of any use  he was on vacation all this week so no chance to tqlk about them - got the results today thru automatic test release by the lab  

i wonder if this is another indicator of why me and others on this forum feel better with iv fluids  correct things my body cant? 

Keep in mind that everyone I have so far heard of tests positive on anywhere from 1 to 10 autoimmune markers on the CellTrend test. Hope I am proven wrong and lots of people post to say they have had zero postive results. In addition, apparently a lot of "normals" test positive as well. There are some disorders like CFS where there is a statiscially but very small difference in presence of some autoantibodies. compared to "'normals" but data a bit shakey. plus these they show up in a variety of different hard to predict condition, so not specific either.

but if you have wanted to try IG treatment anyway then what the h***, it might be  bargaining chip to convince a doc who needs a push to order the treatment for you.

Quick message- I was looking up a symptom I had - that my high blood pressure does not follow usual expected circadian patterns - and found that this happens with impaired autonomic control. The paper said in all cases this was the underlying cause . (the paper then when on to study those with kidney impairment/failure which they argued involved an autonomic failure component). So its another symptom of dysautonomia. Guess i shouldn't be surprised. Have to be careful though with their claim that its always due to failures of autonomic control since in a broad use of that term, one coud say every body system that does not do its job is a falure of autonomic control. I have not yet read the paper, but will.

Yes, that's the line they always use - to compare it to blood donation.

right,  usually ALL these things occur out of awareness -t hat's the point of having an autonomic nervous system! And the point is we have something in which automatic regulation to keep homeostatis, done usually in people every split second effortlessly and without concious awareness, is not longer working.

update: incidentally, just the 5.5 ml of blood indeed worsened symptoms. When i move, my heart rate shoots up and dizzier than usual starting late last evening. I know this is different than my usual "overstimulation" response to say a doc appt w/o blood draw or talking on phone for an hour - distinctly different than the revved up. I'm surprised though so little did have this effect, but my ability to regulate seems to keep going down. Hope this settles down and does not return me to the 24/7 heart palpitations and chest discomfort.

Ah, the tests are from CellTrend. Thanks. yes, I know the company. Am familiar with their offerings, but didn't recognize the acronym. I have thought about it; was also intersted in their tests of auto antibodies s to andrenergic receptors. One thing i wasn't sure of is that since they are the only lab that does them is there really isn't any validation. Was curious if everyone who sends blood ends up with something or other that is positive. That was one of my hesistations.

Also wondered on the quality of the samples they will receive and if they even care about that. My recollection is that really  you want to spin the blood down to serum as quickly as possible and then send the chilled (frozen??) serum- don't remember. And i believe their first choice is to have serum mailed - but they say theyll also take whole blood it memory serves correctly.  I'm not sure this makes sense to me - either the tests can or cannot be run reliably on whole blood shipped long distances, but its not clear which. I think i mentioned elswhere i've gotten results from other places, like some ARUP cytoikine results, that suggest my sample just did not make it there in optimal state.

yes, am familar with the hassle of finding someone willing to hand you blood! if in the US, this varies state by state and of course practice by practice. Has been a big issue for me in the last two years and have been unable to get this (used to be able to just fine) - but just recently with a new designer doc i'm trying, i think this will be just fine - though can't get it spun into serum since the doc office does not analyze their own blood.

Will be most interested to hear how youdo with the sub q IG if you decide to do it.

And kudos to your docs who pursued it. you have much more flexible neuros and cardios than I do for sure.

hi. Quick quesiion. How do you know your "panic disorder' isn't really just another symptom of the dysautonomia? is it accompyanied or caused by worrisome thoughts or emotions and that's why you think it's panic and anxiety rather than innapropriate adreneline release because of this wretched beast? (on driving, after I got a few sever bouts with vertigo for a few weeks, i could and can no longer drive on highways or very busy roads. I used to drive 2,800 miles across the country by myself w/o any trouble. I do not consider it an "anxiety" reaction though- something happened to make visual stimulation too stimulating; seems to go along with alot of things being too stimulationg now - but not what i would consider anxiety. )

Anyone also get visual auras? with my dysautomia onset, besides heacaches, every single night during sleep if i awaken at any pont (often), i have a visual aura in both eyes. parts of it look classic, like some sciniallatio,but other parts do no- negative circular scotoma that pretty much stays put, though maybe grows in size.

interesting that migraines considered auto dysfunction.

don't forget to see if tyramines are a trigger for you, not just histamine. they are for me, but its super extreme for me now. oh, and oreo cookies gives me major visual auras. most fascinationg.

i get all the auras described by the person above- dizziness etc.

Update post blood test. thanks everyone for comments.

Ended up only giving 5.5 ml of blood- mostly because was hard to communicate with the staff. I could have gotten more done. Possibly just as well - i can see how i do with those 5.5 ml later tonight. 

I started getting symptoms during last night again, so I was ok with going today for blood work since felt like I wasn't risking anything if was coming back anyway- heart palps waking me up during night.                                                                                                                                                             

@p8d. Thanks, that's helpful. I have not yet been diagnosed with hyper POTs. i have alot of symptoms that fit with it but whether i ever get officially diagnosed remains to be seen. i think i need to go to an dysautonomia center, but that's easier said than done. And i keep thinking the one day i schedule it , i'll have a miraculous respite in symptoms, be declared "healthy" and no one will ever believe me again.

but i digress. i have the same symptom- anything gets me jazzed up. A doc vist took me 3 days to wind down- was awful. Happy stuff too- i can no longer go out for lunch or dinner with friends because its too "over stimulating". ditto even going on vacation. it's so odd. (also very high bp, elevated metenprhines in blood, especially following an attack, attacks of tachy, though lately, belwo normal heart rates, somtimes changes in hr with position change, but not always to gravity).

i think my extreme reaction to blood draws started before that though, at first though had to be 25 ml to give me that reaction, then the amount started getting less and less.

yes, iv fluid given right after has helped alot, though once, seems like once that "wore off" and my body figured out i really was low in something, i had a reaction.

i have not yet tried clonidine. i know at the ER, they had said has fallen out of favor because now known to give big rebound in bp. Can you tell me if you get rebound from it? but i think that's a great idea. if i'm home not doing anything, things are managable, but would be nice to have that as an option if i need to go out and do someting other than very minimal. does that means the pills can be split in  half? i'm bad with pills and would need to crush it - if one can with that pill.

@recipe for disaster - not sure why you would think I wouldn't react that much to such a small draw just because YOU don't. Isn't that what everyone keeps doing for all of us "Impossible" they all say because it doesn't happen to them or isn't in the textbooks. Yes, iv has helped me too. Totally agree on them not realizing just how much blood they take. Most of the time, labs take anywerher from twice to ten times what is needed. I go throu complex calculations ahead of time to be prepared with the minium amount of blood needed. I had a system and lab all worked out- but turns out the two women i worked with have since left, so was much harder today. will post an update soon.

I asked my rheum for sub q IG to avoid problems with brain swelling and is generally lower risk. He balked at any IG for a long time, but after I got an EP cardio to say I did have dysautonimia, he said he would order it and start the process of insurance approval. That was at the end of april and its now end of july and have heard nothing. haven't pushed it since i'm still not sure i want to take this drastic step. One thing i worry about is contracting CMV.

but was very interesting that when i first raised that i wanted sub q ig and not ivig first he and everyone else said "impossible" - they had not caught up with the literature I had read. then the next time i asked, he had said first dose by IV in the hospiutal outpatient, and then if ok can switch to sub q - so there was progress.  then finally, this last time, he said yes to all sub q as if it was the most obvious thing in the world- so they finally caught up with the literature i had known about  for years about its effectiveness and safety.

the doses are lower, but the studies seem to show its effective for AI stuff as well as immunodeficiency. if the dose is not high enuf to turn off your own immune system, you can always try other options. if you are consideing IG, i would def recommend trying sub q as it is much safter.

oh, and most annoying, my neuro sent some message telling me that its the safer option, not realizing that i was the one that brought it about. not sure why i hate it when I don't get credit... but i do.

now questions for you:

1- can you please tell me more about that autoantibody? I have never been tested for that and don't think i recognize the acroynm. i  have had a neural antibody panel but don't think that was o it (?). Would love to hear more. Who ordered it too- neuro. do you know if these tests require better handling of blood samples? i alwasy am concerned that using a busy satellite lab, blood has to make several stops before it gets to where its analyzed and i don't know how careful they are to spin in when theyre supposed to etc.

2. also, have you tried a bunch of other therapies first? and those havent' worked? \

thanks

Inexplicably, starting thrusday evening after waking up for a second nap - my heart felt normal again. It was like a miraculous lifting of a symptom that made me want to crawl out of my skin. I've posted before on full set of symptoms- the feeling like on speed/cocaine (that's a guess...), revved up, on adreneline, etc. and with it was a heart discomfit, much of which only "non specific T wave abnoramiltiy" on ekg. The discomfirt made me often play on line scrabble on my phone- anything to distract myself because i could not just sit calmly and watch tv- always felt wound up. Has been continous since November where at outset went to ER.

Anyway, for some unnown reason, i'm getting a break. tonight is the 5th evening. But tomorrw, i'm planning to go for blood tests. Even since all of this, i've gotten more and more senstivte to amount of blood taken. Started when i was very anemic but persisted even w/o any anemia any more. What happens is during test and right after test I feel fine - lab staff always falsely assumes i mean i might faint druing test  as in vasovegal response - but then hours later, often when I lie down to sleep, i feel like i'm going to lose conciousness rather than sleep. get dizzy as well. is a horrible horrible feeling. Since i now have very high hypertension, will be interesting to see if i get a drop in bp while lying down when this happens.

but what i'm really worried about, is when happens if this restarts the crazy heart and crazy overstimlatuion again. Now getting back to breing w/o that, i can't live like that again!!

I always negotiate amount of blood and go with complicated lists i've gotten from mayo on minium draws. but tomrorow, i can't get buy with less than 10 ml, and that may be a real deal breaker. 3ml alone for a PTT test which i've been putting off but want, and at this lab, i can't get less than 2 ml for a CBC. That means to get some of the rest of the tests, most of which are serum, i've i have drawn 5 more ml, that's 2.5 ml serum if' i'm lucky, so that will be 5 more tests that have mininum draw of .5 ml serum. Still not enough for all the tests i want, but will get me thru comp metabolic panel, a GGT I want, a lyme western blot, a B-12 level, and aldosterone. won't be able todo the MMA. or igg subclasses, or renin.

anyway, concerned. I could put it off i guess, but just started with a new primary and don't want to drop the ball. plus havent had blood work since ER in novemember, and really wantee ot get some med stuff out of way in july to take a break in august.

but if tomorrow night it starts the revved up thing and the non stop palpitations, i'm going to be so pissed at myself for doing the blood tests!

on a minor note, perhaps i should also get them when i'm having max symptoms, rather than a brief respite.

I had the body jerking thing on trying to fall asleep for years and years. sometimes jaw, somethings one leg, sometimes whole body, sometimes arms. They had wanted to give me clonidine but what worked was going off tyramine containing foods, starting with soy sauce and all asian food. That was the start of my tyramine intolerance (which i should point out could be a different source of aged and fermented foods like histamine and free glutimates).

now i get the interrupted sleep disturbances but with symptoms that "moved on" from jerking stuff to weird head and chest sensations but perhaps it really is the same. and my tyramine intolerance has gotten evey worse. I call them my head zaps. awful. (now i'm gettting a bunch of vidual auras)

yes, after a while, body thought no point in going back to sleep and my chronic sleep loss does not help the dysauthomia and heart symptoms.

I don't know much about that med mentioned unless i know it by a different name. will look it up. I do by the way on OAT test test high for dopamine and low for serotonin. (and have plenty of symptoms that makes one think pheo but dont't think i do).

Any updates on this? Whilst I don't have carpet, I get this reaction to some sneakers. Happened for first time about a year ago and know is happening again with another pair. Both of them had in common a strange newfangled stretchy knit fabric. Get same effects even if wear socks. Plus for the first pair, I let it off gas for at least 3 months- then tried it on and same thing.

What happens is my feet start burning like crazy. The ones yesterday i tried on are still burning today. I can't tell if it is red or not since not sure what bottom of my feel usually look like. Plus feet have a subjective sense of heat.

Seems quite strange that allergic reaction would give neuropathy type symptoms, doesn't it? anyone know how that can be an allergic reaction?

i don't think i mentioned in above post, though not 100 percent sure, that when i had one of the first bout with these "spells" i went to ER and thought it was because i was very anemic. They started iv fluids right after drawing blood. when my hemoglobin came back no that bad, they lost intereste and sent me home without even seeing the doc again (I was later to complain because i went there for heart symptoms and they didn't even bother tsting that. they saw I had tachycardia so the doc estimated how much blood i must have lost- and then when his hyoptheses was wroing and i was not that anemic they presumably jsut shrugged and sent me home)

anyway the point of that long message is that i felt GREAT from the IV fluids. when i went in, i needed a wheelchiar since i could not walk the few feet, and on the way out zero trouble and felt nomral (now i never feel nomral but back then i did). i mentioned it to the nurse, and she said i was probabl dehydrated. I don't think that's right (but at least she tried more than the doctor did),I think it was just saline though for me.

i need to read thru again what ou think that mechasim is. Do you mean that our own faulty signal is not longer present because its taken over by ? By something.

I was not aware that ringers solution could be used to lower bp. or rather was not aware ERs used that to lower bp.

i'd be curious to know what ,if anything, it does to your blood pressure. i seem to get weird reactions to H1 blockers (meclizine and hydroxizine).