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About MTRJ75

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  1. This is a certainly a loaded question because the answer always seems to depend on what I'm feeling in the moment. I'll start with maybe safe and proven exercise methods. If possible, maybe common questions about some of our worst (or most concerning symptoms) answered by experts in the field (since most of us don't have access to doctors who even understand the condition). Maybe also printable information about the condition that we can bring to our doctors that might explain things better than we can.
  2. I've been watching these at a pace of about 2 per week and a lot of them more than once. Just fnished Dr Pace's talk on neuro-gastro issues in dysautonomia. It was fantastic, as most of them have been. There are a lot of questions I'm going to be be bringing to both my neuro and gastro stemming from this. She even talks about being able to discover mast cell activity from past endoscopies (if I understood it right).
  3. Unfortunate that you're dealing with this. This type of thing is something a lot of us deal with regularly, so if you're asking if the vaccines have caused worse flare ups than usual, I believe there may be a thread around here for vaccine experiences somewhere. I don't think you'll find anyone here (yet) that went from healthy to POTS only due to the vaccine. Really hoping this isn't starting a trend or we might see more like yourself in the future. What most of us already here are looking for is if the vaccine is causing our already existing POTS to flare up. There doesn't seem to be a
  4. Okay, so it's basically what it sounds like. Thought the word yoga in front of it might mean something fancier. Used to do a lot of stretching like that back when I was able to work out. Still try to, but it's not always easy. Makes sense that stretching yourself out like that might move along the gas easier.
  5. Nice! I certainly feel the digestive component. I've had some of my tachycardia attacks with PVCs come on when I've been a bit active during the day and then eat carbs or something very hot like soup. Unfortunately, the warning signs are the PVCs and I'm already up to 130 by the time I notice. What's a yoga twist though?
  6. I've always felt it was a small victory when I could get the ER personnel to acknowledge there was an actual physical condition, even if they had no idea how to treat it (which is always the case in my community ER). I was once told by an ER doctor that 98% of the time, it's just anxiety (after offering xanax and a psychiatric referral). I asked him what happens when the other 2% show up? He never came back into the room.
  7. Weakness in the sense that I feel like I'm wearing clothes that weight 100 pounds with such an incredible ache it becomes very difficult to even lift my arms. But yes, this is a frequent symptom that comes with exhaustion.
  8. Can't find the thread where I know there was a discussion on this, but DI just tweeted this study: Frustrating because the insurance co. just denied my cardiologist's request. I wonder if I can use this study to make a difference with them.
  9. Actually, I think some of it is related to Sjogren's. Doctors rarely connect dots between bodily systems. In fact, they may not even be legally allowed to. That's usually left up to the patients unfortunately. Specialists will generally only treat specific symptoms as if they are isolated. If I waited for them to connect the dots I'd still be at square one and likely in even much worse shape.
  10. But what I meant by Merry-Go-Round was Cardiologist refers me to Gastro. Gastro refers me to ENT. ENT refers me to Allergist, who refers me back to Cardiologist with all of them shrugging their shoulders. All of them trying the same standard medications that have failed before, looking at testing that has shown nothing. I just don't have the energy for that all over again without any results. I have a sneaky suspicion that if LDN balances the nervous system, that might correct this problem too, but the neurologist is not going to accept this as a nervous system issue.
  11. I've been allergy tested, probably around 7 years ago now, and then more specifically for mold issues more recently. Nothing actionable came up of course. You describe some of my issues with medications though @Pistol and Claritin has done nothing for me. I did take one of those Claritin red tabs that's supposed to act more quickly and had a tachycardia issue later that day. Basically, when I try to ask the doctors about this I get on the referral merry-go-round because it involves multiple systems. I'd love to be able to find someone to allow a trial of LDN.
  12. My Post-Nasal Drip/Chronic Rhinitis has gotten so bad that I can't eat without choking or running through half a box of tissues afterward. Of course, the worse the mucus parade gets, the worse the skipped beats become, to the point where my chest is really uncomfortable for quite a while afterwards (I'm wondering if this has to do with low blood volume or pooling, despite being heavy on the salt and water). Anyway, I've tried all the popular solutions (clairitin, mucinex). Nasal sprays do very little. Unfortunately, many anti-histamines or decongestants may dehydrate/dry you out or cause
  13. I've had spiked heart rate after meals sometimes, especially hotter ones. The trapped gas thing can usually combine with bad allergies or what feel like traps of thick mucus to cause an increase in PVCs too. I certainly feel like some of my cardiac related issues are digestive related, but other than watching my diet, I haven't found a more permanent solution.
  14. That's an odd one. Not at all as a symptom of our conditions for sure, but as a specific vaccine side effect.
  15. I get them after most physical activity and haven't found CBD has done much for this, at least at a moderate dosage.
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