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toomanyproblems

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About toomanyproblems

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  1. In answer to your title question I would say no, any cardiologist isn't better than nothing. At least not in my experience. Even the head of a very large cardiology department here did not know what POTS was. It was less than helpful. I've been to several non pots understanding cardiologists and it was a waste of time or worse. Even interpretation of tilt table results can be faulty if they don't have a basic understanding. I have not had a tilt table test but I've seen many people report (shown scans of results and reports not just their word) obvious POTS changes from tilt tables where the d
  2. I'm so sorry you're going through all of this. Horrible as it is to write, these weird things you describe seem common or at least not unusual with POTS. I've had POTS for at least 10 years. The only thing encouraging I have to offer is that my symptoms tend to wax and wane on a relative scale. Even if I'm bedridden for a while, I've always eventually gotten up and functioned on a better level for a while. But I'm 67 and have a lot of other problems so they're probably influencing my ability to function. A lot of younger people with POTS get better or are considered cured. I would b
  3. I have a bunch of autoimmune diseases. I had both sets of the Moderna vaccine. Last shot March 3rd. I did fine. I don't take flu shots because of problems. But this was worth the risk.
  4. About how much does it cost without insurance?
  5. I had my second and Moderna last Wednesday. My arm was more sore than last time and I had a hard time controlling my headache. It was fine. I'm glad I'm done.
  6. Will these ever be available to people who didn't register?
  7. I'm sorry this happened to you. It's so unpredictable what adverse effects people have. Even healthy people. I've had the first shot with no problems except a sore arm. I go for my second next Wednesday.
  8. This phantom smells such as smelling smoke when there is none is also being reported in a high percentage of the so called long Covid patients. A significant percent of them are also experiencing dysautonomia type symptoms. IDK if it's in the dysautonomia long covid patients but probably. It could be a symptom of autonomic dysfunction. These patients could fuel more research into autonomic disorders.
  9. I get weakness, especially in the front of my thighs. I'll start out pretty good some days and then my knees will start to buckle. I can feel it start to happen so at worst I just slowly collapse to the floor/ground. When this happens I sometimes have to lie there and build up enough strength to get up. In all cases rest makes it better, eventually and in the moment. It just feels like my muscles won't go anymore. My arms may eventually become weak but usually they do better than my legs. There's nothing I can do to make them go in the moment. It's very much like myasthenia gravis. I have not
  10. So to continue this I do have a pretty red swollen place where I got the shot which is normal. Last night I had flashes of a feeling of impending doom. I actually have this feeling a lot but mostly in the mornings and it's mostly continuous whenever I have it, not flashes. I was just looking up vaccine side effects and feeling of impending doom can be a constitutional symptom. Just FYI for those getting the shot.
  11. I just got my first shot this AM. So far just sore arm and headache (which is normal for me).
  12. FWIW I generally feel better in the mornings. WRT HBOT -- I did 80 sessions in a medical unit five years ago. It wasn't actually for POTS but I felt better in lots of ways. It did not correct the high HR on standing but I was not as symptomatic.
  13. I have the ear clips bought from a previous thread recommendation. However the only thing I have to use them with is what is probably a glorified tens unit but it's called an inferential unit. It's called the IF-4000. I've actually had a tens unit but this one works better for back and spasm problems. I've looked into scientific articles for the settings to use for this unit with my ear clips but it's seems extremely complicated, even with my science background. Is there anyone with a protocol they find useful, particularly with the IF-4000 unit I have? Any help would be so much appreciated. I
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