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About Sushi

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  1. Could you get a referral to an electrophysiologist? They are cardiologists who specialize in the electrical function of the heart and your HR comes from electrical signals. They are the ones to see for any type of heart rhythm problem. I had a similar HR pattern and it turned out to be tachy-Brady syndrome or sick sinus syndrome which is very treatable. If a cardiologist gave you a heart monitor for a couple of weeks, they would have an exact recording of what is happening. These monitors are one or more electrodes that stick on your chest with a method of broadcasting the data to a device lik
  2. I really think that is your personal choice! I have a pacemaker and the scar and bulge are obvious but I don't make any effort to hide them. I think it just depends on how you feel about it yourself--medical devices are not shameful in any way. It is just like the decision someone who is getting chemo and loses their hair must make--should they cover their head, wear a wig? Whatever makes them feel comfortable. Best wishes!
  3. I have very mild MCAS—just a tendency to get hives and itches from food, insect bites and a few medications. I think that Dr. Klimas has been implying that mast cell activation could be behind some of our symptoms that don’t seem to be related to it and that the vaccine had a potential to create mast cell activation for some time after vaccination.
  4. Have you seen Dr. Nancy Klimas’s comments and recommendations? https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html I have had both doses of Pfizer. After the first I increased my mitigation strategies for the second: I started Zyrtec several days before and took it for about 10 days after as Dr. Klimas felt that subtle mast cell activation could continue for some time and cause an exacerbation of our regular symptoms. I also took higher doses of the supplements she suggested and I greatly increased fluids and electrolytes, drinking a liter of Pedialyte after the vaccination. I also
  5. As I remember, my valsalva test was about the only normal part of my autonomic testing. It was in all the other parts of testing that the parasympathetic was too strong. Whether an SNRI would be appropriate for an individual depends on assessing a whole array of autonomic tests—so your doc needs to do some more investigation if the valsalva was the only test he did. Hope this gets figured out.
  6. I tried it for a number of months but could not tolerate either the standing or the arm movements. The teacher even had me practice in a chair, but I could not tolerate it. Responses to it will be individual, but it didn’t work for me.
  7. The parasympathetic and sympathetic aspects of the autonomic nervous system each regulate different functions. We get problems when one tries to take over in a situation it is not supposed to control. My parasympathetic system dominates when the sympathetic should dominate. For me this results in orthostatic intolerance. I did well with norepinephrine reuptake inhibitors that increase sympathetic response. But we are all different and it looks like your neurologist has some homework to do. Perhaps he would be willing to do a consult with an autonomic specialist to get more understanding of you
  8. @angelloz I gather your chest CT was normal? I was having similar symptoms and had fluid in my lungs--probably as a result of severe mitral valve regurgitation that snuck up on me. It was discovered in a routine echocardiogram. Hope your resolves soon.
  9. Just a note: some of us, probably the minority, have a vagus nerve that is too activated. I have tried to find out how a vagus nerve stimulator would affect those like me? My parasympathetic system is dominant.
  10. I had my first dose of the Pfizer on Wednesday. Sore arm, then overnight slight headache, sinus congestion and chills. Fine the next day. Yay!
  11. Brigham and Women’s hospital in Boston. There is another researcher there, Dr. David Systrom, doing interesting work on exercise intolerance.
  12. I completed 4 months of modified cardiac rehab and was able to double my exercise capacity but the program designed for me was much, much less strenuous than the one linked above. I was really impressed with the knowledge of the doctors and exercise physiologists involved. I only used recumbent machines (nothing upright except one lap around the gym before and after a session). They had me rest for 5 minutes after each 5 minutes of exercise and checked pulse and O2 levels after each 5 minutes. They also had me do stretches and to only exercise twice a week instead of the usual three times. It
  13. To "get the vaccine or not" is a question that many of us will have to face. I was wondering if anyone who sees an autonomic specialist has raised this question with their doctor? Since this is a brand new type of vaccine we can't really extrapolate from our experiences with conventional vaccines. Thoughts?
  14. I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?
  15. Or perhaps something you are taking to combat allergies? Decongestants can do this (ones like sudafed). Strangely, I discovered after much trial that fish oil capsules give me palps. I checked in on an Afib forum and some others also reported this.
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