• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. K

    Rx Sleeping meds to seek/avoid

    1st night had 5htp & valerian. Slept ok, but no different to previous For only $2, DHL shipped to Australia from iHerb. Arrived in 3 days!
  2. K

    Rx Sleeping meds to seek/avoid

    That’s, confrontingly, interesting! Do you have a link to said videos?
  3. K

    Rx Sleeping meds to seek/avoid

    Thank you for your reply I took the plunge on the weekend (what else do us sufferers do?!) & bought Doctor’s Best brand of 5-htp from iHerb If it doesn’t work after a couple of weeks, I’ll take melatonin as well (from existing stashes) Currently, take 2000mg valerian I’ll report back
  4. K

    Rx Sleeping meds to seek/avoid

    How does 5-htp (hydroxytryptophan) differ from taking straight melatonin? Melatonin has no effect on me, even at 5mg dosages I need something to help sleep on a regular basis, so didn’t want to keep taking zolpidem
  5. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    How can you know that it is not some other effect/change or placebo?
  6. K

    This disease has a sick sense of humour

    Someone else on here mentioned a couple a years ago that they had their cortisol tested & it’s reversed for us - low in the morning, high in the evening. It’s a fairly simple medical test
  7. K

    This disease has a sick sense of humour

    From personal experience, a full dose will knock you out inside 30 minutes, guaranteed. You actually start to hallucinate, if you force yourself to stay awake. If you allow yourself to relax, you will be asleep under 15 minutes. A half dose will be within an hour & a quarter dose about 2 hours...
  8. K

    This disease has a sick sense of humour

    Nothing of the kind for me. Simply puts you to sleep, quickly
  9. K

    This disease has a sick sense of humour

    Have you tried zolpidem? Knocks you out in minutes. Don’t need full dose. Use in combination with natural supplements (eg valerian, melatonin) to stay asleep
  10. K

    This disease has a sick sense of humour

    Tired all day, then wake up in the evening
  11. K

    benzodiazepines

    Zolpidem (Ambien) is far more powerful & far less addictive
  12. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    No change yet, no side effects 7x 1ml doses so far
  13. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    I’ve had 4x 1ml doses so far with no side effects
  14. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    Took my first 1ml of C60 olive oil this morning, straight from the syringe into my mouth https://carbon60oliveoil.com.au/shop/c60-olive-oil/ No effect. Had to stop low dose naltrexone first a couple of days ago, to minimise confounding effects
  15. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

  16. K

    OMF-funded RBC Deformability Paper Published!

    The lead author on the study indicated on Twitter that they will be doing further investigations that will include the correlation between disease severity & deformability
  17. K

    ME/CFS patient makes major improvement and goes back to work from C60 supplement

    I am going to try this - so I will give my feedback
  18. K

    OMF-funded RBC Deformability Paper Published!

    This would suggest that Colchicine makes little difference to red blood cell deformability in MECFS patients
  19. K

    Constant vertigo/dizziness

    What happened?
  20. K

    I need to sleep! Help !!!!!

    I cycle between amitriptyline (endep), benzodiazepine, (temazepam), zolpidem (Stilnox/ambien) & doxylamine. That way I don’t get addicted to any (although I believe drug addiction is conditional on personality - it’s very difficult for me to get addicted to anything)
  21. K

    Comorbidity with Sleep Apnea

    You should know within a couple of days & at most 2 weeks if it’s working
  22. K

    Despite being exhausted, do you have trouble sleeping during the day?

    I cycle through benzodiazepine, amitriptylene & doxylamine. Doxy gives the greatest hangover.
  23. K

    Suicide vs Modafinil

    Modafinil is what caused my #mecfs to slide from mild, for 24 years, to moderate within 3 days. That was over 2 years ago. Never recovered.
  24. K

    Doctor in Melbourne, Australia to prescribe Valtrex (Valacyclovir) for 6 months

    OK, thanks. Is there somewhere I can order Valtrex from online without a prescription?
  25. K

    Doctor in Melbourne, Australia to prescribe Valtrex (Valacyclovir) for 6 months

    Can anyone recommend a doctor in Melbourne, Australia to prescribe Valtrex (Valacyclovir) for 6 months, off-label? Michael Oldmeadow at The Alfred Hospital won't do it Don Lewis at CFS Discovery won't do it A local GP would only do it for a month, stating 'lack of knowledge'
  26. K

    Benzodiazepines (Temazepam) don’t help sleep - your experience

    Thanks for that. I will try it
  27. K

    Benzodiazepines (Temazepam) don’t help sleep - your experience

    Doxylamine (an anti-histamine) seems most effective What drugs have helped you?
  28. K

    Despite being exhausted, do you have trouble sleeping during the day?

    Yeah, it’s a nice form of escape
  29. K

    Despite being exhausted, do you have trouble sleeping during the day?

    Ever since my CFS went from mild to moderate (can no longer work), where I now feel the need to lie down all the time, I can’t sleep even though I desperately want to during the day. When I had mild CFS I could regularly sleep like clockwork for an hour in the afternoon. Anyone else experience...
  30. K

    Have you had an increase in phlegm/mucous?

    After I went downhill significantly 2 years ago, I have had a significant increase in mucous production Worst after sleeping