Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About toomanyproblems

  • Rank
    Advanced Member

Recent Profile Visitors

1,108 profile views
  1. Yes, like protein shakes. There are a lot of commercial products that you can mix with milk or other liquids that you can live off of. I also bought a Vitamix to grind up vegetables and fruit very fine. I still have to be careful of how much fiber is in there. I can only use half of some of the commercial products because there's too much fiber for me. I can drink as much water as I want. In general, fiber, fat and sugar delay stomach emptying.
  2. I was diagnosed with a pretty bad case of gastroparesis by a gastroenterologist while in the hospital for the same. They did a gastric emptying study (described above), a colonoscopy and endoscopy but you probably don't need all that. I was given Reglan, a commonly prescribed med for it. Like Domperidone, it has its limitations. I quit taking it after a few weeks when I started having symptoms of tardive dyskinesia, a known complication. While my symptoms from delayed emptying can be somewhat waxing and waning on a relative scale, I was only able to consume liquids for a couple of years. After
  3. Hi Pistol, Your description of autonomic seizures sound like one step further of my jack knife type jerking when my whole body kind of convulses into a fetal position then releases into a straight stiff position. As I said above I accidentally picked one of these episodes up in the middle of the night while videoing to see if I was grinding my teeth. Whenever this happens it wakes me up. Often after I've finally fallen asleep exhausted after the leg jerking so I may not be picking up the progression from leg jerking to this jack knife thing. This. I haven't known how to put words to
  4. Wow, I am VERY interested in response to this right leg getting bigger thing. My right leg, actually my entire lower right quadrant has had significant edema for seven years. I've been to a number of specialists over it and nobody knows why. It start slight but over a year's time seven years ago, progressed to quite a bit of edema along the entire leg and upper pelvic area. the last time I saw someone over it was in Feb, before the covid shut down. It was a cardiologist (head of the dept) who I'd seen before for a procedure to rule out vessel blockage causing it. In Feb he said he didn't know
  5. I understand all of this. I didn't just have an infusion and decide it wasn't worthwhile. I'm not saying it's not worthwhile. I still do it. Even over the past few weeks I've been regularly doing them. My point, which I guess got missed from my not communicating it well enough or rambling too much, is what is the core problem, and can we actually cure it by breaking the cycle of imbalance well enough. Is there a tipping point we should strive to get closer to in hopes of restoring normal control over our sympathetic nervous systems? Or are there elusive core problems that will be difficult to
  6. I've often wondered if one could *force* ones parasympathetic nervous activity to overcome sympathetic over-reactivity. For example if you did yoga and meditated for x numbers of hours a day, could you influence the autonomic nervous system control failures present in hyperPOTS? Is this something that is a cycle that can be broken and better balance between the sympathetic and parasympathetic nervous systems established that could lead to a more permanent fix? Does it matter how long this bad cycle has been going on or how debilitated you are? Does it matter why you have POTS, which is a syndr
  7. I have this problem and it's getting worse every year. There are fewer and fewer things I can handle watching on TV and I seem to not be able to tolerate any conflict at all in real life. I'm also very noise sensitive at times and somewhat noise sensitive always. I've always had a really good sense of smell and that too overwhelms me often now. Even something that smells good is distracting for me. I have hyperPOTS and I feel like my nervous system is breaking down and unable to respond appropriately less and less as time goes by. I have no idea what helps. I just avoid the things t
  8. I don't get flu vaccines. I haven't had one in 30 years. The last one made I had me sick for six weeks after. I will get a covid vaccine but only if Dr Fauci says its safe and effective. I do live in an area where it's high risk and getting worse. I'm not sure how many "regular people" have access to the best treatments right now and I think my chances of making it if I got it would be slim without heroic treatment. The best are the monoclonal antibody cocktails but they will never have enough of that for regular people. It's just not possible. Hoping for a vaccine and a better spring.
  9. If you search there have been a number of times this has been brought up over the years if you'd like more responses. Personally, my pulse pressure frequently becomes very narrow. Twelve is the worst mine has been that I can remember rn but my BP was 52/40 at the time so things weren't going well in general. But I can have a pulse pressure of 20 daily at various times over the day. I've had one that was 100/82 the dr's office even, and mentioned it to the nurse, who repeated it but was not alarmed. I think it's a thing for many POTS patients, but I don't think there are many medical staff edu
  10. Can people describe exactly what happens with these likely autonomic seizures?
  11. Thanks you for sharing. An in vitro study like this can be valuable for further studies but it's never going to be the same as an in vivo (inside a living being) study. It's like a jumping off point.
  12. I had an EMG years ago for myasthenia gravis. I would NEVER go through that again. I have no idea what causes this jerking but it seems better since I've started IVIg and now since Covid subcu Ig so a nurse doesn't have to come to my house every two weeks. It helps a lot of my problems. It still does happen though and like the OP said, it tends to go on for a few days (sometimes more) and then disappear for a while. I have the jackknifing/convulsing whole body thing on video. I was just videoing to see if I was grinding my teeth bad at night and picked it up. Although I could probably ne
  13. This is EXACTLY what happens to me. I don't normally go in for much but this was like torture. Exactly like you said, like a build up of electrical energy that became extremely uncomfortable and then my body jerked and it discharged. Only to start again. It was impossible to sleep and as soon as I fell asleep I was jolted awake again. Over and over all night. It started before I went to sleep and continued even after I was so exhausted I fell asleep between episodes. It seemed to get better by morning. It happened sometimes during the day as well. And also like you said, usually it was my legs
  • Create New...