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Everything posted by toomanyproblems

  1. I had botox for migraines several times. It did help some. It didn't make them go away completely but it decreased the number and sometimes the severity. I've questioned whether my own daily headaches are actually migraines because the headaches often seem triggered by allergies. However they are helped by sumatriptan (Imitrex) and my understanding is if the headaches is helped by sumatriptan then it is by definition a migraine. Also an MRI supported chronic migraine changes to my brain.
  2. So with adrenal insufficiency, which is the reason for my question, there can be decreased serum sodium and increased serum potassium, with urine showing the opposite. And usually increased urine volume. External steroids (in excess), especially those with high mineralocorticoid properties, can raise serum sodium and lower potassium. Five mg of pred daily is within the range for steroid replacement even when the adrenal glands are being suppressed by the external steroid. While prednisone does not have a lot of mineralocorticoid activity, it does have some. Along with a normal aldosterone that
  3. Do you know what your potassium is?
  4. IIRC POTS was not recognized officially until 1993 or so. You KNOW people had it before then. I've often wondered what they called it.
  5. I've been following these after effects from Covid in some patients for awhile. I'm very sorry this is happening but I, too, view it as a possible good for dysautonomia patients. I was in graduate school in the late 1980s as they were starting to rev up on the science of AIDS. The understanding of the immune system was advanced by decades from the AIDS research. I'm hoping for something modestly similar for POTS. It will take a while for things to get more in gear though. The world is still reeling from this virus and even basic discoveries seem frustratingly slow to me at this time.
  6. I don't watch horror movies but I feel like this every day all day now because of the upcoming election. I'm not even kidding. I wake up with dread and horror and I fight it all day and then I can't sleep. I'm sure this reply will be deleted but I can't be the only one this is happening to. The current political climate is making my hyperPOTS so much worse and I don't know what to do about it.
  7. For the question about Ig. I've been getting IVIg off and on for three years. A nurse comes to my house and does the infusions. A neurologist ordered it but it was extremely hard to get insurance to approve it because it's very expensive. I've had to have the dosing and schedule adjusted because of adverse effects. When I last got it, I was getting 30g over one day every two weeks down from 60g over two days every three weeks. The biggest problem I have from it is brain swelling. I haven't gotten it in a few months due to Covid. I can tell the good effects are wearing off. Since it appears Cov
  8. When this happens do you feel too full if you eat more? I'm asking because sometimes gastroparesis is accompanied by dumping syndrome, where instead of the normal delayed emptying from gastroparesis, the stomach suddenly dumps its contents without trying to digest them. I normally have delayed emptying but when I've had a POTS flare, I've also had dumping. I think it's just a screwed up ANS problem. I can see how if you have dumping you could have hunger pangs.
  9. Mine flips as you describe and goes back again over fairly short periods of time. I have hyperPOTS by BP and HR. But I can have orthostatic hypotension on any given day. Usually at night.
  10. Vision is one of three ways we maintain balance. Dysautonomia greatly stresses balance so it can "use up" all of your natural processes. I commonly have trouble with more dizziness after reading or studying something intently using my vision. Dysautonima is one of the rare causes of tunnel vision. Vision takes up a large part of the brain's function. When circulation to the brain is compromised like being upright when you have POTS and are about to pass out, the brain tries to maintain vision as long as it can by decreasing the focal range to only the center of the field, thus tunnel vision. I
  11. I had pretty significant differences once after a steroid injection in my spine. Not just once, but for several hours. It was scary but eventually the readings became closer. It was definitely outside of normal variation.
  12. Or you can have both. Winter of 2019 I had a very bad spell of a couple of weeks where my BP, which can trend from high to low and back in days' time was swinging from high to low within a day, and the highs and lows were more extreme, especially the lows (one recorded BP of 52/40). I was passing out a lot. I was also having extreme issues with controlling internal body temp -- fluctuating between uncontrollable hot flashes and sweating to freezing cold in a cycle at least every hour and at its worst, every 20 minutes. I had big cool packs and a heated blanket on my bed to combat these problem
  13. I'm sorry. I didn't mean to sound like I thought your question was poorly worded. I really just wanted to find out what you meant by IgG positive. *I* should have worded better.
  14. The IgG the covid test, or any antibody test for that matter, is looking for IgG specifically directed against an antigen, sites on the coronavirus causing COVID in this case. This is only fraction of one's total IgG, which will consist of individual antibodies directed against thousands, and possibly millions of targets. I'm not sure what you mean by IgG positive?
  15. Would you mind describing what symptoms were helped by Wellbutrin?
  16. You've always seemed to have your finger the pulse for this disease. Can you briefly share your relapsing and remitting course? I understand if it's too much to ask.
  17. I've had to take steroids for over 30 years for my primary adrenal insufficiency (Addison's). Sometimes I have to take over the normal physiologic replacement dose because of flare ups of other autoimmune diseases I have. I have hyperPOTS. My POTS symptoms don't get worse with extra steroid. The extra steroid helps a lot of my problems but not the POTS.
  18. While appears true the virus can bind to the ACE2 receptors and may enter cells this way, it's not immediately clear how to use this information to protect people from infection. As research delves into this virus more over time, other possibilities arise. In the link below, a recent paper describes through a docking model how ORF8 and surface glycoprotein could bind to porphyrin and how orf1ab, ORF3a and ORF10 proteins of the virus bind to and disrupt heme on the beta chain of hemoglobin, causing less hemoglobin that can carry oxygen. This article makes the argument that because oxygen b
  19. Many of the precautions are circulating widely and now known to most people interested. In addition here are some facts as we know them right now for the coronovirus: It can survive in/on: Air - for up three hours Copper - for up to four hours Cardboard - for up to 24 hours Plastic and stainless steel - for up to three days Of course factors such as humidity and temperature will affect its survivability. These figures are under favorable conditions. Since I've been thinking about this for a while, I've been honing strategies to minimize exposure from surfaces
  20. Hi Scout, The panic of the last two days is not where I am. I've been quietly preparing for at least three weeks because looking at reports from overseas, I could see it could be bad here and that I was at extreme risk if I get it. I've done what I can and so now I will wait. Stay safe and try to flatten the curve for the sake of yourself and everyone else.
  21. Hi Kim. This may be the info on plaquenil you were referring to but I included the link below anyway. There's a PDF link to the full scientific paper in the summary I linked. I did read and evaluate the full paper as a scientist and it looks pretty good. It was used a little during the SARS-1 outbreak so they had info to help. If you are already on 400 mg of plaquenil a day you may have a leg up. Thanks for bringing it up. Unfortunately, I don't take it anymore and I don't have any left. https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa237/5801998
  22. Thank you for posting this. It's helpful information.
  23. Kim, I will keep you updated. From what I understand, plaquenil has shown promise in pneumonia from the SARS-CoV-2 virus (SARS-CoV-2 is the name of the actual virus; COVID-19 is the name for the disease it causes) by acidifying certain cellular activities thereby inhibiting replication. A good ref to see the drugs currently being repurposed in trials is here: https://www.nature.com/articles/d41587-020-00003-1 Edited to add: My plan is to put off getting this as long as possible so they can be further along in treatment options.
  24. Well, I'm retired now but my ex-husband is still in the field as an infectious disease specialist and is keeping me up with the developments. While they don't have data supporting some of these off label treatments such as Plaquenil and more logically, HIV drugs, there are trials for the HIV drugs in China and now Spain. I'll be happy to report anything I hear if people are interested.
  25. Thanks, Kim. I appreciate you relaying your own situation wrt to your location and relation to the Disney exposure. I know my own risk unfortunately. Like others, POTS did not occur without other problem conditions in me. Plus I'm 66. My roots are steeped in the medical community so I understand the virus as much as is known and what they're saying to do to prevent it. I guess I just wanted people to discuss it in general and read what they had to say more than to be personally reassured but I wasn't very clear on that. I've now moved on to treatment options so I'll be prepared. Hopefull
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