• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Hope78

    How do I block CRH (cortisol-releasing-hormone)?

    No medications for that yet. They run some tests in Germany with crh blockers. But not approved til now 0
  2. Hope78

    From hypo to hyperthyroid fast

    What did pink salt do to your thyroid?
  3. Hope78

    Anyone experiences inversion of circadian rythm?

    I was thinking about that too (shifting my rythm to one hour later each time. But as you wrote my energy is best at night/late evenings. So once my rythm will have shifted back to a normal pattern I will probably have less energy!? Just a suggestion, I guess I'll have to try. But sleeping early...
  4. Hope78

    Anyone experiences inversion of circadian rythm?

    Thank you for saying that, thats really very encouraging. I love the day and the sunlight so I find it hard to miss it. At the moment its still ok bc we have summer here, but when winter comes and my rythm will shift any further I will end up as an vampire. But for me - at least at the moment -...
  5. Hope78

    Anyone experiences inversion of circadian rythm?

    I did all this and still use blue light blockers, but I dont notice any difference, sadly. But glad it worked for you :-)
  6. Hope78

    Anyone experiences inversion of circadian rythm?

    Hi there, I've always been a night owl but since I got worse with CFS my circadian rythm is shifting a lot (feeling awful during the day and better at night). I am currently going to bed between 4 and 6 am, then sleep for 3 hours, lying awake another 2-3 hours before getting tired again and...
  7. Hope78

    Poisoned by sleep, please help

    Is it also getting worse after sleep or is it independend from sleep?
  8. Hope78

    Poisoned by sleep, please help

    Thats exactly what I intend to do, just waiting for good test days. I will also test the catecholamine levels.
  9. Hope78

    Poisoned by sleep, please help

    Ok, so I did a bit of research and I think (at least for me) I know (or I partly know) where this horrible feeling after a full night of sleep comes from. We all know what often occurs in CFS is a downregulation of the hpa axis. That means the hypothalamus/pituitary system and the adrenals...
  10. Hope78

    Poisoned by sleep, please help

    Same for me, cannot tolerate melatonin! Thats why I thought this might be involved. Large doses of coffeine sometimes help, everything which gets my stress hormones going. Normally they are too high but on these days I think they are all low. Methylated folate along with b12 injections sometimes...
  11. Hope78

    Poisoned by sleep, please help

    Soxfan, I know exactly what you mean. It also leaves me completely useless the whole day until late in the night, when my system finally wakes up :eek: I once took a monster dose melatonin and this felt somehow similiar. Maybe a mix between low cortisol and melatonin not being degraded fast...
  12. Hope78

    The more (normal) I sleep the more exhausted I am?

    Thanks, I've already found it :-)
  13. Hope78

    Poisoned by sleep, please help

    Unfortunately I also get this after an afternoon nap if it was longer than 30 minutes. That sucks :-(
  14. Hope78

    Poisoned by sleep, please help

    Omg I have exactly the same thing going on! I did a post on this today in the sleep forum. After 7-9 hours of sleep I feel so drugged up the whole day, its a nightmare. I function better with 5 hours of sleep, but am too wired to nap then. What the *#&§* is going on here? Never ever had this before!
  15. Hope78

    The more (normal) I sleep the more exhausted I am?

    Hi there, I suffered from bad insomnia for years. It improved a little bit. But what now happens: when I get 7-9 h of sleep I dont feel refreshed, its like my whole system goes into hibernation, I can barely keep my eyes open! That does not happen when I sleep very bad (3-5 or 6 hours). This...
  16. Hope78

    Thoughts on CFS, histamine/MCAD, and toxicity.

    Justy, may I asked how you received the EDS diagnosis without being hypermobile? I have MCAD plus gastroparesis and lots of folks with this constellation have also EDS. I have some EDS features, but not the typical hypermobility!
  17. Hope78

    List of ME/CFS + POTS Related Autoantibody Panels (That Your Doctor Can Run)

    Wow, great information! I am just researching which antibodies to test. Main symptoms are leg weakness (thighs) with frequent cramping, tingling, twitching, numbness, cramping in the calfs, worse when I walk a few steps. The same day my gastroparesis (paralized stomach) started, so I always...
  18. Hope78

    Does anyone here do low dose HC?

    I am on hydrocortisone, too. But mainly to keep my mastcells in check, they behave especially bad when my cortisol levels are on the lower end. I am taking between 5 and 10 mg, but 10 mg is already interfering with the feedback mechanism in the brain, so I am not taking this on a daily base...
  19. Hope78

    Adrenaline rush from MCAS?

    I hear what you say, I am in a similar place. Adrenaline and cortisol surges from MCAS and in between low adrenal problems, so it's a rollercoaster; only thing that helps is hydrocortisone, cannot tolerate mastcell medication, it paralizes my gut (I have gastroparesis). I will give the brain...
  20. Hope78

    Intolerance to meds since CFS?

    The medication intolerance preceded my cfs. Some years before it all begun I noticed I didnt tolerate the medication I was able to use all the time. Then histamine intolerance, alcohol intolerance and so on. I didnt have a sudden onset, it was more gradual. But I suffer constant insomnia & pain...
  21. Hope78

    Just wondering why MCAS is so common in certain conditions?

    Yes, that was what I thought, too. I can only eat 10-15 things in small amounts due to mastcell overreactions. That's not normal or healthy at all.
  22. Hope78

    Just wondering why MCAS is so common in certain conditions?

    How do you mean that?
  23. Hope78

    Riboflavine/b2 and histamine

    My OAT test showed me to be extremly deficient on b2. I have mast cell activation and riboflavin is listed there as a mast cell degranulator. Any ideas why....?
  24. Hope78

    Just wondering why MCAS is so common in certain conditions?

    Hi! I spend a lot of time reading in mast cell support groups (facebook and so on) and I rarely met a person who does not have something like: - fibro - cfs - mcs - eds - autism The mast cell activation seems so extremley common in these folks. I don't think mast cell activation is the main...
  25. Hope78

    Antihistaminic flavonoids: Quercetin, Rutin... especially Luteolin

    I saw you are homocygous for MAO. Quercetin is known for inhibiting MAO, so no wonder you felt a bit agitated
  26. Hope78

    Very low pregnenolone & DHEA, normal cortisol

    Hi, thanks for your replies! PeeWee: I thought my problem is cortisol, too. Because 4 years ago I had very low saliva testing. But cortisol normalized and now my precursors went down. I think it will really become a problem when I enter menopause! Sancar, oh yes, it really ist. Because in CFS...
  27. Hope78

    Very low pregnenolone & DHEA, normal cortisol

    Hi, I did a pregnenolone and DHEA-testing and both came back really low: Pregnenolone-S 13,7 ng/l (70-250) DHEA-S 49 ng/dl (100-300) Cortisol 103 ng/ml (50-250) My sex hormones are also normal (estrogene, progesterone), testo is always in the more lower to very low range. I consulted 2...
  28. Hope78

    What causes uncontrollable cortisol spikes?

    What do you mean with that?
  29. Hope78

    MCAS or HNMT issues (or both)?

    Thanky for your answer. I wrote you a pm.
  30. Hope78

    What causes uncontrollable cortisol spikes?

    I had a lot of testing while having different symptoms. So in the meantime I now how the different states feel and to which "hormones" they are related.