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  1. @p8d we have alot in common. Will send u a message.
  2. Ps my mesage crossed with other peoppes so i still have more to reply to.
  3. @blizzard sOmething similar seems to be happening to me. I tested mine standing today about noon , standing, 143/92 with heart rate 93. 5 minutes later i lied down, waited 3 minutes and: approx 12:07 pm. 131/86. Heartrate 74 waited about 18 minutes (should have done it sooner ) Anout 12:25 pm. 129/79 and heart rate 72pm so e of it nay be from de reased activity, but still- i cant do anything or it goes up Guess thats not too bog a drop but i bet if i keep lying down it will go down further i think my sitting is in between and closer to standing. but will test when docs offices test sitting and standing they do it too fast less than one minute delay a downer i guess- i really hadnt realized that my low readinga were not time of day or even general relaxing but are i tbinkspecifically lying down rats Im not really sure now how to treat a high blood pressure that is so radically different standing and supine. How do u treat yours? If it brings ot down while standing, does yours then get too low when sitting? I had a similar experience to you in the ER except with heart rate rather than blood pressure this was back when I was very anemic for unrelated reasons so my blood pressure seemed to be fine. But what would happen is my heart would stabilize when I was lying down. It would go down to 100 or sometimes in the 90s then the moment I got up to use the bathroom for example my heart rate soar to 146. they quickly made me go back to bed. they ran for the portable EKG machine and hook me up to it again. At this point of course I was lying back down. By the time they got the EKG machine about two or three minutes had already passed. They kept telling me to lie still. I kept telling them that if I lievery still my heart rate got to go back down to normal again. I at least tried to get them to do it while sitting up but they refused well they got on the EKG was maybe a slight tachycardia but pretty much normal. It was pretty frustrating and they just eventually gave up trying It is hard being a zebra in an er full of horses.
  4. The zebra one doesnt like ordering anything hes not had experience with He tbought was worth trying (his son takes it for primary immunodeficiency) but thats when he thought other doc had ordered it. Havent started yet. When i inquired to fibd out if insurance approved it yet is when he is dumping me tell me more about the clonidine- especialky the rebound part. So my concern is when it wears off, my bp will skyrocjet to unchartered territory. I know i get to hypertebsive crisis periodicalky my highest gas been 220/110 Yes feel awful revved up hard to talk and breath at same time dizzy Have been in ER during one but was useless i wanted to be admitted but they refused but yeah the docs and nurses freak out when they see values like that doc tiday was concerned one of tbese spikes will give me a stroke dont k ow if have hyperwndrenergic pots since have not had the formal testing somet things fit, some dont Have you had blood metenephrines checked and if yes what were results? Yes for sone reason this rheum today took it all seriously he is asmart guy but coukd not think of a single thing i had not tbought of he tried so hard The nurse intereupted and asked him when hed be going to the patient waiting next door... i have also list massive weight since last visit 13 lbs less than last visit may 2017 which is very big for ne since i do t weigh much many foods trigger attacks tes
  5. Ps. Forgot to say - also look yourself at the MRI report if u havent already. theres something whose name i fofgot that can produce weird visual symptoms even tho docs will say "normal". Cant remtmber if neural auto antibidies have been raised.
  6. So today at rheum office, bp was 175/106. Wasnt surprised since am in attack mode. Its been higher. I brought my own bp machine with me and got 175/105. That was at 10:30 am. Am lying down now and its 3:45 pm. This is usually the tine of my lowest bp daily (bucking the usual circadian trend) just took bp and its 113/75 Headache! Often get that when my bp falls. Sure seems like screwey autonomic stuff Highlight of my visit today: doctor said he thinks i may well actualky be a zebra. No kidding Lowlight of day: came home to find my other rheum who oromised me a hard won sub q IG is trying to dump ne as a patient. luwlight
  7. I alternate as well- I refer to it as going back on the doctor circuit. I do better when I stay away for all those reasons you list as well as recovery time, but then perhaps i forget, or new crops of symptoms make me want to branch out again...and back on the doctor-go-round I climb. I try to avoid flu season (as well as first few weeks after schools are in session becasue bugs fly then too) so am trying to cram in a bunch now. In my case, I have established AI disesase, so dysautonomia blamed on that. That can have a downside too, since no one will believe me these symptoms started with a recurrent virus. as far as theyre concerned, they have their little parsimony story. Some of them still want to rule out pheo , even though only 1 percent of people with my symtpoms and test results will have pheo, cause their med training says so. But if its not that, they ignore it. Which specialist are you seeing tomorrow? i have an appt with one of my rheums tomorrow. Not sure why I made the appt. haven't been to this one is 15 months and part of the circuit seems to be to go back occasionally just in case you end up needing them again. Going to be tricky as bp way up today from some foods. not sure what tomorrow will hold. if i'm hypertensive crises at these places, they get all flustered and nothing else gets done. Still need another cardio, and now for first time need a derm...have a new patient allergy appt end of sept (check out mast cell stuff), back to retinal specialist early november, a different rheum in decemeber..,likely another go round for bloods in november, thinking about a particular integrative doc but don't have the energy to give him all my med records (and he's super expensive), thinking about a neural evaluation (will cost me 3,000 bucks) and lots of energy, thinking about a dsyautonmia center..I went from the best full time job to the worst full time job. . good luck tomorrow (pistol: by the beast, just meant a general term for all the med stuff going on with dysautonomia. i think some parts of the dysautonomia more uncomfortable than other parts; eg. adrenal excess that won't shut off is unpleasant, the weird heart rhythms unpleasant; makes it hard to just enjoy the moment.
  8. Try closing each eye seperately and look at an Amsler grid. Are the visual disturbances you are experiencing present in each eye? just one? also look in mirror and make sure your pupils aren't too dilated, so look in fairly bright light when they should be small. ever try GABA to try to downregulate the neural signals? I get a bunch of peculiar eye syptoms too. they also have things in common with migranous aura but not compltely. so lasts all night long every night, starts up a soon as I start to drift off to sleep. I see a black circle; i think its a negative scotoma, and its surrounded by some scintilliationg lines. Then by am the circle gone but there's like a chekcerboard of scintillating lines. Lately i've gotten visual snow. NOt sure if mine are blood flow related, You might find this of interest https://www.reviewofoptometry.com/article/visual-aura--and-scotomas-what-do-they-indicate I think I may have a bartonella infection by the way (based on DNA testing on my skin, nose, mouth and gut), though all the cranial nerve stuff started with a rash that I could swear was either zoster (shingles) or simplex 1 (cold sore virus) given the nerve pain that preceded it. But perhaps i had some other infection that goes after nerves.
  9. @both of you Thank you very much for the encouragement. I really greatly appreciate it. I think i'm under the illusion that giving up means I will be able to rest easy, but it may well be false. The discomfort probably comes from the symptoms of this beast alot more than trying to troubleshoot it (not counting medical obstacles) @stay at home. You are probably right- taking a break for a while then regroupting may be better than giving up. have not tested anything but tsh fora few years so not a bad idea to retest just in case - thanks - ditto cortisol which can produce fluctuating temps,. Agree on the finding new docs, but also lately finding thats exhausting. the symptom list is 10 pages so initiating each new doc takes so much effort and time. My new internist is amiable at least so perhaps that's enough for now. The PA comments don't help at all. I'm aware of what those idiots do and it just does not serve chronic illness well. They should be looking at trends ,e,g. , my recent drop in WBC, and also its bad enough so many of them ignore trends and only use "normal range" that then to further say " well, its close to normal so lets ignore that too". the ranges are supposed to be 95 percent confidence itervals (95 percent of "normals" fall in that range) but both the reference population as well as a different confidence intervals, e.g. hospitals set the range so that its harder to fall outside of it, and at the other extreme, docs who run their own labs set the range so that it's easy to fall outside it, and chain labs like quest and labcorp are in the middle. It's impossible for docs to keep up with the literature like I do, so what bugs me is when they are not open to considering the new research they know nothing about. Anyway, i think i'm rambling again. Thanks again @Pistol As said above, thank you very much for support. But as I said in another message (you may have missed it), for some reason you and I are like polar opposites on our views! Maybe i should be clearer - the concern is not that I'll have a heart rate of 51 one second and be dead the next, the concern is that this reflects that this beast has not stabalized. It's a marker things are not improving, and likely shifting as systems try to accomodate the new normal. Also find it really absurd that you say if theyre not concerned about test results, then i shouldn't be either! Do you think these folks care if I or you live or die? They just want to avoid lawsuits and get thru the day. Perhaps the good ones will be interested by something. But that's the limit of it. Low WBC is not normal for me; they should be looking at trends. And yes, occurred to me might be my recurrent virus, but instead of thinking "its just that" like you do, i'd say this is then prime opportunity to figure out exactly which virus it is since its accomponyed by distinct symptoms. Perhaps its any virus would make dysautomia worse (as is well known) but there may be a tighter link as i suspect direct damage from virus to peripheral nerves. there's been uncertainty as to what the virus is. so now if we wait until my wbc normalizes, we will have missed yet another opportunity. so as always, you and I just don't agree on anything! except of courfse wishing all of us recovery.
  10. Inalso have the twchy when moving whilst lying down. I did not know that was a symptom of hyper POTs. I dont have a diagnosis yet but share the adrenal excesses that are just awful. Did you have elevated serum metenephrines? Mine are 1.5 times normal. Trying to decide if i should travel to a dysautonomia center to get tested officially for hyperpots since woukd be a massive undertaking. How long did u say u had symptoms for? Weirrdly for me after so many continuous months of a hyper andrenergic state with he up to 145 during flare up spells , , my heart rate now is sinking Bp still spikes tho. Will be watching your thread with interest since have been wondering if do get a diagnosis whether theres be some new treatment options i currentlt dont have access to.
  11. Ive been wondering the same thing. I get the bp spikes too with systolic as high as 220 and my allergies have been increasing maybe epi pen jr. for a smaller dose? Ive been figuring that if i i need epi for allergy it would be because the bp dropped to low and would just bring it back up and not overshoot. And effects of epi wear off fast. But maybe all wishful thinking. One of several reasons am avoiding beta blockers for bp is because of allergic reactions when u take an antihistamibe (h1) does it do anything to your bp or other adrenal excess? Lately i cannot take an h1 blocker since makes me heart pound. (Not sure yet my dysautonimia is hyperandrenergic pots). Is there any connection between your hyper pots and allergies? Eg i think i may have a mast cell problem.
  12. Doctors now say to me "you've got alot going on". The odd thing, is they all started saying this at the same time. Even my lawyer said it for the first time. It's like there was some signal dispersed far and wide that I've now passed some kind of threshold. I was not amused when new primary asked on the phone how I was doing. I said "hanging in there"; he chuckled and said Hanging in there not so bad when you consider all that you have going on. on to the autonomic attack. This one was a bit different. I noted the steps as best I could. Sounds like a migraine with aura but I don't think so: Autonomic attack Aug 19 Was soaking feet. as usual in magnesium chloride and other things with 97 deg water as I do nearly every night when after 10 or 15 min feel felt like burning and I didn’t feel quite right. About 9:45 pm. Thought maybe was irritating feet since do it so often and removed feet. Suddenly got a hot flash. 10 pm. Have not had one in a while. Note I do not think these are hormonal but a vasomotor instability due to dysautonomia and part of an aura. (theres a couple of sites, but i'm too tired to find the links to paste them in) Then pretty much immediately. head starting pounding. Migraine like pain but all over both left and right side and back of head like usual but also left nasal, a common site of nerve pain (ever since got the recurrent virus that started it). Realized in retrospect has having heightened olfaction for at least an hour before hot flash, maybe longer. Went to bed (11 pm), head a little worse including back of head pain Took blood pressure (frequently do this) and saw my heart rate was lowest it has ever been – 51! (Two weeks ago it had reached a new low of 56). My bp a little higher than usual but that happens day after certain foods. Usually heart goes up with attacks- now its going down? My body temp either that night or next moning (can't remembe) was lower than i've ever seen it 96.9 Tried to sleep but was dizzy and felt like would pass out. Heart was also pounding. Was too hot one second and too cold the next Kept putting sheet and blanket repeatedly on off. Occasionally alternated so fast felt like was both hot and cold at same time Feet started burning again Tinnitus started. (Note I checked my usual overnight visual aura and was a bit different with wider central black area but hadnt yet fallen asleep so cant really compare). But did sleep (by about 12:15) No zaps or interruptions and slept all the way until 5 am awake I think from noise or dizzyness. Every time I moved muscle in bed heart would pound. (Head still hurts) Heart rate measures in morning: 56 supine 64 sitting (right away) 83 standing (after half hour) The next day, there was minimal difference in heart rate with different positions but ever since then, the alternating hot and cold has continued. I used to get that daily much of day- but it had stopped until Aug 19. Day after though big differences again. Alot of my heart reactivity isn't postiion dependent necessarily, but with any movement regardless of gravity. that does not fit well into usual model. My white blood cell count is down to 3.5 (normal in that lab 4-11); i think lowest its ever been. I asked the doc why I bother to get blood tests if all they do is ignore my numbers. Mentioned I keep collecting clues with lab tests, but then people ignore them or just repeat them until they happen to catch a normal value and then think "resolved". Alot of foods cause jumps in bp as I mentioned. I think macadamia oil was latest culprit. too many food senstitivies to mention and wondering of glutimate more than tyramine main sources of trouble- but not sure. Anyway, I choose i a good user name for myself. I really am Weary. Feel like i have been watching for a quite a long time now one body system declining. Would take too long to list them all. Generated a 10 page list a couple of months ago- and even since then more has cropped up. Ok, guess i'm through rambling. At some point soon, i have to stop reading medical journal articles ('m qualified to do this), stop going to a zillion specialists, stop taking lab teststhat are ignored anyway, stop taking EKGs whose abnormalities are ignored anyway, stop taking urine tests whose values are ignored, stop posting - just make myself comfortable as best I can and let whatever happen. I really have done what I can for a very long time.
  13. Others or Dr. Google may have to comment on the alterned chloride level, but one thing that jumped out at me was your elevated monocytes. Do you get recurrent EBV? That could cause both the elevation and autonomic dysfunction in my opinion
  14. Have you found the genetic variant that goes along with your son's condition? supposedly hyperandrenergic POTS often genetic (though i may have it and no identyifyable gene)
  15. I'm more or less happy with my panasonic bp machine- was sharing in case others were dissatisfied with theirs and looking. Also am fine with my daytime pulse ox, spot check, meter which is very accurate and has lasted years. (name isn't on the unit; i can look it up but likely most people have found an equivelent easily). Thanks on garmin suggestion for heart rhythm recording. will look it up. if its like a fitbit though, then that's not what i'm looking for. I want to get continuous reading of wave form, i guess it would be like at least a one lead EKG. And for pulse ox, one I can wear for at least a couple of hours during th enight nd, store the data, and easily inspect the next day.
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