• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Sushi

    Help, trialling gabapentin

    I remember feeling a bit dizzy a while after taking it and feeling groggy in the morning and it did take a couple of weeks for that to go away—on my second try with it, I titrated it up really slowly and I don’t notice any side effects now. And yes, it did have a negative effect on my sleep...
  2. Sushi

    Help, trialling gabapentin

    I was prescribed Gabapentin for sleep, starting with 50 mg per night as it can be hard to get used to it. I titrated up to 100 mg but stopped after a while as I didn’t think it was helping sleep. Later another doctor prescribed it for restless leg syndrome which was driving me nuts and I tried...
  3. Sushi

    Simmaron research start new rapamycin trial

    Good luck Rachel. This is an interesting one. Please keep us posted, 🤞🏼
  4. Sushi

    Sinus surgery

    It is indeed difficult to find a doctor knowledgeable enough to diagnose EDS, however if you suspect the hyper mobile type you can look and online for ways to self diagnose, which are pretty much the same methods a doctor would use as they don’t yet have a test for hypermobile EDS. And if you...
  5. Sushi

    Sinus surgery

    Here is something else to consider – it could be TMJ dysfunction rather than strictly a sinus problem as the symptoms are very similar. This is particularly true if you have Ehlers Danlos syndrome, which I do, and I only discovered in the past year that my “sinus” problems were actually rooted...
  6. Sushi

    Beth Mazur

    Julie Rehmeyer shared Beth’s last days and wrote about it beautifully on Facebook and Twitter. I’ll share the Twitter link, but because each Twitter post has limited characters and this quite a long post, you will have to click on the first post and then scroll down to read the entirety. You may...
  7. Sushi

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    Very well. I had Afib and the ablation put me back into normal cardiac rhythm and the colchicine did help a lot with inflammation.
  8. Sushi

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Phoenix Rising does have a Facebook page.
  9. Sushi

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Agreed—a good health forum is an incredible resource—Facebook groups are hopeless in comparison. This forum and other special focus forums have sort of saved my life. And Rich—how we miss him. Every time I pick up a bottle of folate or B12 I remember him. Friends ask me how I learned so much...
  10. Sushi

    Anesthesia Preparation

    Thank you! Three weeks brought a big change—just need patience and Netflix!
  11. Sushi

    Anesthesia Preparation

    Not unless they tell you it is OK. I just had general anesthesia and I was allowed only one small sip of water in order to take a med they had ordered. The risk is aspiration as your normal protections against it are turned off by anesthesia. By the way, I am 2 weeks out from the procedure and...
  12. Sushi

    4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency

    Thanks, that is very helpful. After reading about the Tulane study, I took 100 mcg of methyl folate and developed a really bad headache. This reminded me that the same thing happened when I was seriously working with a methylation protocol years ago. I simply did not tolerate methyl folate—or...
  13. Sushi

    4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency

    No, but I could only tolerate tiny doses. The pills I had were 800 mcg and I don’t think I ever got above 400 mcg. I read through the article till the end and yes, they did find out the addition of methyl folate improved symptoms in the majority of their patients.
  14. Sushi

    4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency

    @Mary Well, that is a humdinger! Back when we were excited by methylation protocols some of us were tested for all the varieties of folate. I had extremely high levels of un-metabolized folate and way below normal levels of active folate. I was also extremely sensitive to introducing active...
  15. Sushi

    Beta blockers reducing melatonin (!), causing insomnia?

    @Mary I just listened to a YouTube video by Dr. Sanjay Gupta from York Cardiology in the UK. He has a special interest in POTS and mentioned that a low dose of a beta blocker might help with sleep in POTS patients because of blocking adrenaline.
  16. Sushi

    Beta blockers reducing melatonin (!), causing insomnia?

    I take propranolol 10 mg before bed and I think it helps me with sleep, though I do supplement with 2.5 mg of melatonin as well. I didn't know about it possibly reducing melatonin but I did read this: Propranolol also inhibits the effects of the stress hormone noradrenaline. So, perhaps that is...
  17. Sushi

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I noticed that the instructions said to take only one per day and not more--did you keep your dose at 2? Maybe that was too much? Hope your perseverance brings a good outcome.
  18. Sushi

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    Thanks. How is it going—are you noticing any changes? I am continuing to have significant sinus drainage from the oral dose of one capsule a day.
  19. Sushi

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I’ve only tried it orally so far. How is it going with the nasal spray? And how much saline solution do you use for the contents of one capsule?
  20. Sushi

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    I took the first dose yesterday and by evening my sinuses were draining. Second dose today—this is very hopeful! Looking back at stool tests, I do have a history of Staphylococcus.
  21. Sushi

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    @Hip Thank you—this looks brilliant. Here is the link to US Amazon: https://www.amazon.com/SUPERSMART-Lactobacillus-Probiotic-Infection-Capsules/dp/B01G7DKJGS I have been using Nasobiotex (L Sakei) on the inside of my nose and it works but only when used infrequently, like once every 10 days...
  22. Sushi

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    For me it will be given to reduce inflammation as an ablation uses radio frequency to burn lines on the inside of the heart—in other words, lots of inflammation!
  23. Sushi

    Colchicine as a potential anti-inflammatory and COVID-19 treatment

    I just learned that I will be given Colchicine for a week before and two weeks after a cardiac ablation that is coming up. They are finding that it helps healing post ablation. Anyone have trouble with side-effects from it when taken only short-term like this?
  24. Sushi

    Addressing blood pooling

    This was the most helpful drug for me as well, though this may not be the case for the majority as it increases norepinephrine in the synapses.
  25. Sushi

    Addressing blood pooling

    That is the huge question with no answer yet. Small frequent meals seem to help rather that less frequent large ones. Meals with lots of carbs seem to increase pooling. You may not realize it, but most of us get pooling in the lower abdomen as well and some find that abdominal binders help...
  26. Sushi

    Post-Op Drugs & Anesthesia - Fatigue was Gone!?

    Great idea! They often given medications that you wouldn’t expect, though for good reasons. I have a surgical procedure coming up that will require intubation and I will request to speak with the anesthesiologist beforehand as there are some anesthesia guidelines for ME/CFS patients and I would...
  27. Sushi

    Post-Op Drugs & Anesthesia - Fatigue was Gone!?

    Most often they give Fentanyl and Versed (a benzo) for twilight sedation, and yes benzos temporarily relieve symptoms for many of us. Too bad that they have a downside!