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About MTRJ75

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  1. I have many reactions to this post. The price paid for simple pleasures is incredibly unjust. Although, you did get a positive experience out of it, which you appear to be happy with. Most times, we suffer for nothing. The ability to think be able to think like this seems to be a common thread in many people who have eventually recovered from what I have read.
  2. Lying on my right side, I've noticed this, though it only goes up about 10 bpm. In fact, last night, I woke up twice with palpitations, both times lying on my right side.
  3. 17 years...God bless you. I don't see how I could mentally or physically last that long. I just don't have the means either. Everything you say is completely rational of course, but I find planning things or trying to keep a routine becomes incredibly frustrating because this condition always knocks me out of it. I actually may be better with spontaneous and never actually planning on getting anything done. I already have to carve out several hours around showers. Meditation and breathing exercises seem to have the opposite effect on me. The former just makes me incredibly exhauste
  4. On the bolded points: 1 - Yes, absolutely. It's like the anxiety thing. I'm not anxious and therefor have symptoms. I'm anxious because the symptoms feel life threatening. It's difficult to be happy when you have all these symptoms, but I know certain unexpected positive distractions (say a phone call) could leave me feeling temporarily better (maybe because my brain forgets what was wrong for a few minutes/hours?) 2 - Believing that I am one of these people and that this is all temporary is what often gets me through the roughest periods or the feelings of being trapped in my own b
  5. On a certain level, I understand all this @Pistolbut figure the arguing if I don't get it done may be worse than the consequences if I just try to do it. I usually have my opening mid-afternoon until dinner sometimes, and thought I had one yesterday, but apparently did not. Then the problem becomes that I'm too wound up to lay down, but sitting doesn't help much. It's just an awful, unexplainable all over feeling that I don't know how the human body can frequently survive and only someone else who experiences it could understand.
  6. This recent blog post seemed pertinent: https://www.healthrising.org/blog/2020/11/22/autoimmunity-b-cells-mitochondria-happiness-chronic-fatigue-syndrome/ I suppose it could be argued that how do we know it's not the other way around - the patient who feels better then has more "uplifts", as is argued in the comment section, but perhaps whatever brain chemicals are released by these uplifting events counteract the dysfunctional signals being sent out.
  7. Good news and great timing. I should be just about done with the POTS guide posted about a month back by then.
  8. I have to admit, that's not the most encouraging response considering most of the things you mention I've either already tried unsuccessfully, are impractical (freqeuent IV fluids) or unavailable to me (top specialists). I can't tell whether I'm constricting or dilating or maybe both? We tried a vasoconstrictor about two years ago and it increased my PVC burden terribly. But if histamine is vasodilating and increases skipping, why would a vasoconstrictor also increase them? Unless I'm mis-understanding (brain fog is bad tonight). Did it to myself again today trying to clean again.
  9. Bolded part so hard to get anyone to understand. Okay, then maybe a different question in the meantime. If I can't currently control what happens to my body, how do I learn to better control my reactions to it? I can prepare myself for these things all day with rational reasoning about how I should respond, but it never seems to work that way.
  10. I want to say again that this has been a very helpful response. I've come back to it several times over the last few weeks with ongoing issues. The keywords/phrases: histamine, vasodilator, "makes the heart more irritable" have helped bring me back to my senses from the auto-fight or flight response my body and mind are having frequently. I know the more I have to clear my throat, the more skips I have that day. Just as frustrating, I feel I can only sometimes minimize them by sitting perfectly still for long periods of time and this is not what we want to do. I tried to vacu
  11. Did this ever happen? I haven't received them yet.
  12. Did this today and real quickly (will try to post a more in depth report when able): - It was actually fairly difficult for everyone to hear one another and to know who was supposed to talk when. - The note above about the paperwork the lawyer asked the neurologist to fill out may have helped a lot. It basically filled in most of the gaps the judge was asking about in terms of specific diagnoses and testing. - I was asked to describe my symptoms and typical day and was able to get across that there are no typical days. Things change by the hour. - My lawyer emphasized t
  13. Think I made a big mistake today. Been clearing my throat/esophagus all morning from congestion. Felt like so much mucus in my chest that I could feel the skips coming on and was getting a big one every time I took a deep breath. Then I made the mistake of eating (bacon and eggs). This only exacerbated the mucus problem and skipping. This feeling in my chest is awful right now. It's almost like I can feel the lack of blood flow with the ectopics building up a few seconds before they happen. Then I'm belching and coughing my brains out. It affects everything now (breathing, heartbeat, digestive
  14. It sounds like some of you get this much worse than I do. I do often feel an indescribable feeling in my spine that can coincide with these but I don’t feel like that’s necessarily the generator.I Stress makes them worse but it not always a factor. The worst are the neck snaps.
  15. Has anybody had any of the "Additional Autonomic Tests" (p. 53) done? I'm not sure I even understand most of it, but seems like something neuros/cardios might not be equipped to do.
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