Weary

Members
  • Content count

    66
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Weary

  • Rank
    Advanced Member

Recent Profile Visitors

138 profile views
  1. 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
  2. Weary

    hyperadrenergic POTS

    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)
  3. 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.
  4. 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 expending considerable scarce physical resources to go to a dyasutonomia center, requiring travel, possibly hiting a companion, arranging considerable food restrictions etc etc It woukd be major expidition - only to get there and find that day my body decided to doits best normal person initation, perhaps from the novelty of it all od pass all tests with flying colors id be declared healthy, all my current diagnoses codes superceded by record "does not gave dysatonomia" which would hurt greatly meanwhile, my flare from the ordeal, which woukd start 1-3 days following getti g hone, woukd be so bad od be bedridden, it woukd last months- but now no one would believe me.. so thats one reason havent pursued it...i need a dysautonomia walk in clinic oli can go to rather than an ER, but i guess tnose dont exist or perhaps a doc office not a "center" where i could go several times and expkain and come up with a plan to be seen at the right time to add a final irony, ive been in many regular doc offices during attacks, even once a cardio, and they do nothing can count 5 off top of my head but probably more but prob when in a dysautonomia office id be having symptons of someone elses specialty
  5. 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- id vote for my bp device. So far the only bp device i can tolerate is the Panasonic portable (upper arm). It works differently by starting with low inflation and gradually increasing the pressure. The other machines including the most popular brand. start from other direction and my arm finds them too painful, even if i use them with a small cuff attachment.
  6. Weary

    Low Blood Volume Questions

    @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 tube
  7. 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.
  8. 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.
  9. Weary

    ANdrenergic storm coming now?

    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 these. but good news is I must be recovering faster from these than the weeks it took in the past since not doing badly at all today! of course that may change when i speak to the doc tonight, if he bothers to call.
  10. Weary

    And from here?

    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.
  11. @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 ones I wanted were not tested for. (which is too bad because somtimes one can be positive on the more specific test but not the general one). Also wondered if my sample even made it to mayo properly, let alone to another country.
  12. Weary

    ANdrenergic storm coming now?

    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 on and im suddenly in bad shape again
  13. How about carcinoid, triggered/unmasked by the flu?
  14. 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.
  15. 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...