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    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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  1. seaflower

    What is the mechanism of feeling tired but not being able to sleep?

    Wired and tired, yes What is LDN? I've tried everything. I was also wondering about that 5HTP or whatever it is. I have some, don't know how to use it.
  2. seaflower

    What to do when Klonopin/Doxepin stops working?

    That's a lot of interesting information. I just want to say that I am still on 1mg clonopin. I've been on it for maybe 20 years now, not much choice. I need to sleep. I have never had any problem getting off it--I do get off it every so often if I start needing to take 1.5 mg. But I'd like...
  3. seaflower

    Amino acids for sleep

    I took Glycine about a year ago for sleep--it didn't cure the insomnia but amazingly, it did cure my fibromyalgia 100%. Now my Glycine is in the HIGH range so I can't take any more. Does "methyl donor" mean that it contributes to the detoxification system? I don't know what it means.
  4. seaflower

    Amino acids for sleep

    ...and I had 20 amino acids tested by Genova Labs but no one knows how to interpret the results. The lab provided a prescription but I would have to find an actual MD to prescribe it (and I have an appointment but am dubious that he will write the prescription.) One thing I am very low in is...
  5. seaflower

    Amino acids for sleep

    ...and I had 20 amino acids tested by Genova Labs but no one knows how to interpret the results. The lab provided a prescription but I would have to find an actual MD to prescribe it (and I have an appointment but am dubious that he will write the prescription.) One thing I am very low in is...
  6. seaflower

    Amino acids for sleep

    I'm found that GABA helps with sleep for me. But I was just tested for amino acids and I'm very confused with the results. I guess one of the most confusing things is the glutamine, (was high), glutamic acid (was just above average) and then it has ratios--Glutamic acid/glutamine very...
  7. seaflower

    Body jerks during the night

    Oh, on magnesium, you take it until you have diarrhea from it. I didn't spell that right, my Klonopin has worn off and I am tired and can't go back to sleep. But I can take 1000mg of magnesium easily. There is something wrong with me and I can't absorb any kind of magnesium and my former...
  8. seaflower

    Body jerks during the night

    Zinc--my husband takes it every night. He was on Mirapex, an expensive prescription, and we just substituted the zinc and it works better, no side effects. Especially if you are older you will probably need more zinc. Last night he didn't take it and was kicking and jumping around in bed. I...
  9. seaflower

    What has helped more with your sleep?

    I recently saw an explanation but I don't know if it was on here. They work in different ways though. It's kind of weird. I don't now why doctors don't know these things and why we either have to read about it on here or figure it out for ourselves. They would rather prescribe some pill...
  10. seaflower

    What has helped more with your sleep?

    I'm sorry about your pain. That would make sleep doubly hard. You're probably tried everything but I heard that acupuncture helped with neuropathy. I am getting the osteo too--seems to be coming on all at once, pretty depressing. Started Glucosamine again. Thanks for the information about...
  11. seaflower

    What has helped more with your sleep?

    Yes, 600 mg works for me too. For a few nights I was able to cut it down to 300 but now I'm back to 600 mg. I sure hope it doesn't stop working. May I ask, in case I have missed it, what your pain is? Do you have fibro? Or is it some other kind of pain?
  12. seaflower

    What has helped more with your sleep?

    Gabapentin is sort of working for me. It does take 3-4 hours to kick in though. When it starts to hit me, I feel dizzy and tired, which is fine with me. Fine after all these years of not getting tired enough to sleep. I still have to take clonopin with it though. The difference is that I...
  13. seaflower

    What to do when Klonopin/Doxepin stops working?

    The gabapentin worked great the first night with zero klonopin. I actually had dreams and a full night's sleep. It hasn't worked that well since so now I've been using a little bit of Klonopin with a reduced dose of gabapentin. I need the bit of klonopin to put me to sleep and the...
  14. seaflower

    Body jerks during the night

    Zinc can be the answer for restless legs. My husband was prescribed some expensive prescription that has horrible long range effects. I googled and put him on zinc and it cured the RLS. It works especially well for older people and anyway it's good for your immune system. I don't think...
  15. seaflower

    What to do when Klonopin/Doxepin stops working?

    Thank you for the explanation! I had never even heard of Gaba before. I am finding these past few nights that the Gabapentin does work but it seems to take hours to kick in. Last night I finally had to take a tiny bit of klonopin to get to sleep. Also, the Gabapentin leaves me dizzy and...
  16. seaflower

    What to do when Klonopin/Doxepin stops working?

    http://www.benzo.org.uk/bzequiv.htm That link could be very helpful. I have taken many of the benzos on that list. Also the non benzos but none of the non benzos work for me. We are all so different individually. Some of those benzos work for me; most don't. One, Lorazapam, I think...
  17. seaflower

    What to do when Klonopin/Doxepin stops working?

    I can't get near Valerian the smell gags me. Yes the smell is like dirty socks. It's disgusting. I've tried it so many times even though it smells horrible but it never worked until now. Now that I've taken 900 mg, it WORKS. I slept for 8 hours and even had dreams. I am overlooking the...
  18. seaflower

    What to do when Klonopin/Doxepin stops working?

    I also wanted to say, my original name on here was seaflower but my email was hijacked and now I can't get my account back. So now I am seafloweragain. Anyway. After many many years of CFS and klonopin to sleep, I did some more online research and figured something out. First, you remember...
  19. seaflower

    What to do when Klonopin/Doxepin stops working?

    I don't blame people for taking Klonopin. If nothing else works and you have to sleep, what else can you do? I do think it works differently for CFS people. I have read somewhere that we usually do not get addicted to it. We can stay at the same dosage or maybe just have to increase it a...
  20. seaflower

    Trazodone experiences?

    50 mg will make me sleep through the night but it's not worth it because I am sick and dizzy and tired the next day. 3/4 of a pill won't make me sleep at all--not enough. So for me, it just doesn't work. Clonopin is the only thing that works for me.
  21. seaflower

    Your thoughts on my sleep disorder

    Interesting. I did look up clock genes after I read this and it's depressing to think that maybe some of us were born this way. In my particular case, maybe I wasn't born this way (I hope not) and maybe I gradually slid into the night owl habit. It's made worse by the inability to sleep...
  22. seaflower

    Your thoughts on my sleep disorder

    Are there any updates--because this sounds exactly like me. :( I did get a tiny bit of help from L-Glycine. It cured my fibro in three nights of taking it (was taking it for sleep) and it gave me dreams for the first time in years. I've tried all herbs, theonine, melatonin, etc...
  23. seaflower

    Forms of magnesium and sleep

    Well, time has passed and along with the magnesium oil and the clonopin I experimented with seriphos and NAC. I don't know if either one helped but someone suggested an extended release form of one of them, NAC I think. That's because the NAC did have some effect: knocking me out at odd times...
  24. seaflower

    Forms of magnesium and sleep

    Try it on the soles of the feet. Drinking that Natural Calm might help too. My profile pic? I never thought of it the way you describe but then I know what it is. It's my pot of nasturtiums this past summer hanging from a wooden bracket. I love nasturtiums. xchocoholic, I will try...
  25. seaflower

    Forms of magnesium and sleep

    I think I do have adrenal issues. I'm going to try to put my 23andMe results in my signature so maybe people can help me. It would be great to sleep through the night with NO clonopin (if that could ever be possible) and also not to be so weak and tired feeling all the time...
  26. seaflower

    Forms of magnesium and sleep

    I'm like everyone else on here, I guess. Taken Clonopin for years/decades. Tried every herb, every *something* that is supposed to make you sleep. Taken every form of magnesium I have ever heard of. Nothing worked. (Okay, L-Glycine for three nights per the Japanese study DID produce a...
  27. seaflower

    23andMe results and detox profile--how to interpret it

    Thank you so much. I smashed the Solgar pill just now and put some of the crumbs under my tongue. Immediately got the headache but nothing like yesterday. I *knew* I shouldn't have bought such a high dosage but the salesperson ( who seemed knowledgeable) talked me into it. I think I can...
  28. seaflower

    23andMe results and detox profile--how to interpret it

    Oh dear. I just took the sublingual B12 and instantly got a bad headache and tears are running down my face and I feel strange. It must be the brand--Solgar. I am reacting to an ingredient? mannitol, microcrystalline cellulose, veg. stearic acid, silica, natural cherry flavor, veg...
  29. seaflower

    23andMe results and detox profile--how to interpret it

    Thank you for all the information. Today I bought the sublingual methylcobalamin B12. It's 5000 MCG and I don't know how often to take it but will take one in a few minutes. I do not live near mold anymore--that was many years ago and I had to abandon the house and get a house that was...
  30. seaflower

    23andMe results and detox profile--how to interpret it

    Thank you for the replies. In case this gives any clues, I never had much energy as a kid--I was always being given iron for "anemia." Marriage + birth control pills ruined my health, I became allergic to a lot of things & got major depression>divorce>antidepressants which only made me...