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Everything posted by Weary

  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.
  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
  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 t
  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
  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
  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 fluct
  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 sp
  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
  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
  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 f
  16. Do people recommend using this site to find a dysautonomia doc in ones state? Other methods? am still debating if i should tale the energy to do this officially. I do rechnically have the diagnosis in my charts because an EP cardio helped me out but hes not an expert in it and i still dont have anyone who can help with the hyperandrenergic state and other manifestations One of the posters here described something ge called "health anxiety" by which i think he meant his heart rhythm was fine when formAlly tested and doc thought ge was imagining it all id be like that i could say e
  17. I notice people have mentioned doing their own EKG recordings and overnight pulse ox at home. I would be interested to know what peoples fave equipment is. Ive considered a fitbit, but that would just be heart rate and i woukdnt even get heart rate variability data. Ive considerd a polar hr moniter, but a constricting band around my chest i would find unwearable. For pulse ox, i think i tried one brand that stored data but was too tight on finger to wear more than 30 seconds. So suggestions welcome would be great if we had a general sharing equipment ideas registry. Lets see-
  18. @laimy with that aldosterone level, woukdnt you be diagnosed with hypoaldosteronism? Have u looked up to see how many of your symptons that might explain. I had been looking a bit to see if i might have psuedohypoaldosteronism based on agenetic mutation i found, but i dont fit the profile did u say renin low too? Usually the two together can illuminate whats going on. My aldosterone on last blood test two weeks ago was 9 sitting up so unlikely to be cause of my high blood pressure. I didnt test renin this time since i didnt think the lab woukd get their act together to chill the
  19. Any particular reason they dont just get it over with now? Its a sensible test under the circumstances and may give everyone some answers . (My mother had one in her 70s and was fine with it even tho she like me didnt do well with meds and other inteusions) ) You dont need to answer if youre trying to conserve energy. I will try to read your story before asking any more questions.
  20. Even if its not low in the normal population, it is low for me and thats what i think mAtters. For others normal, for me a symptom.
  21. Wiull take a look - thanks much - but actually, I tend to wear ear muffs rather than ear plugs. I have a hard time tolerating things in my ears. Didn't bother going into details since usually the freq blocking effect of muffs and ear plugs seemed to have been about the same (i've gotten so used to not bothering to let the world know the sheer number of normal things normal people tolerate just fine that I cannot) So surprised to see that on low freq and earplugs- I don't suppose you know ear muffs that do that too?? would be awesome. I do mindfulness meditation, but of minimal use for the
  22. Could the ear tumor and related have damaged the cranial nerves? I feel like that's what started mine- was after recurrent virus (i think either zoster or simplex 1) that seemed to mess with my cranial nerves.
  23. @kimin - that sounds like some of the same things I posted concerns about in a thread last week on CellTrend. There's quite alot of positives in "normal" people, plus found in other diseases that have nothing to do with dysautomia or POTS. Plus the ambiguity surrounding serum vs whole blood as shipped overseas was an issue. Will be curious to hear more about the mayo test. Is it part of one or more of their AI neural panels? e.g. dysautonomia, or encephalitis, or paraneoplastic panels? I had one of them done; some of them are reflex tests only so when my ANNA was negative, some of the one
  24. Thanks. Its other way round ear plugs block high frequency. Very hard to block low frequency. I remember once trying bath during fireworks but didnt seem to block noise cant take baths by the way - they seem to trigger viral recurrences. Frustrating - cant drink eother, or take pills, hey maybe someone wants to sing me a lillaby... Not a happy camper somi ce shoulder blades and neck hurting from all tne rapid window closing Could set me back weeks so alot to get thru i teresting how i can be ok one second but then the next stuff cascades and piles o
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