International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Insomnia ideas?

Discussion in 'Sleep' started by kaffirlime, Nov 11, 2017.

  1. perchance dreamer

    perchance dreamer Senior Member

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    I was always intrigued by LDN to treat insomnia, but did not want to try it because of all the reports I had read of people having increased insomnia when they were first on it. I finally tried LDN, and it has helped so much with my sleep. I had other side effects at first, but it helped my sleep some from the beginning, and that beneficial effect grew the longer I was on it.

    I'm on 2 MG of transdermal LDN, which I apply to my skin at night. The transdermal form is not as well absorbed or well studied at the oral form, but my doctor recommends it for uber sensitive patients like me who also have gut issues. It works for me. I still have to take sleep meds and supplements, though.
     
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  2. Awags1986

    Awags1986

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    @Lipac I'm in Ohio, but grew up in Michigan. I am lucky in that I have the Cleveland Clinic and a wiekd renowned POTS doctor in Toledo, but the process of getting my insurance to allow me to go to either one of them is beyond slow. Also, neither one of them treat CFS to my knowledge. I can only hope for some relief of my POTS symptoms eventually at this point. I'm seeing a decent functional medicine doctor so hopefully that starts to help...We shall see. I hope your situation improves with time!
     
  3. Lipac

    Lipac Senior Member

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    @perchance dreamer
    That's GREAT LDN worked for you. My God ND told me what a wonder drug it was for her FM patients.
    Id been sleeping 3-4 hours for months while trying to recover from something else for 7 months.... I gave it a good try, went to sleeping 1-2 hours. After two weeks I had to quit.
    End of story- went back on Lyrica after being off 8 months, and everything resolved in one night.
    I guess everyone is very different.
    I wish LDN or CBD or med marijuana or trazadone worked.

    Only Lyrica and clonazepam have worked over 18-19 years trial and error.

    I'm in MI now, and there's a stigma attached to both that makes me feel like a crack addict...
    I wish I didn't need Drs at all.
     
  4. Lipac

    Lipac Senior Member

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    @Awags1986 ...lol. I am not surprised you're in OH. I practiced medicine in MI 30 years ago and it was good. Now I feel like I'm in the backwaters of a Southern Bayou . Someplace where no one can read. Honestly... What happened?
    My bro is an ER doc who travels for work. Last year he walked into work in WA /OR and had heart attacks with emergency surgery FOUR TIMES.
    When he's here in MI having symptoms, he won't let me drive him to U of M even. People all went to Cleveland Clinic for heart surgery, but he'll only go back to OR.
    Go figure.

    MI is mobbed with Summer tourists, to the point locals can't enjoy the state or afford a summer cottage anymore...
    So WHY aren't there decent Doctors??

    BTW, your functional medicine Dr isn't the one suggesting a psychiatrist, is he/she?
    I found a FM Dr who was really loony.
    Hopefully you found a good one.
    I paid out of pocket for move; unfortunately he's decreased, or I wouldn't be in this mess.

    I knew when I was 30 I needed to leave MI- gut feeling.
    I never should have returned.
     
  5. Awags1986

    Awags1986

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    It was my PCP that suggested it. My functional doc started throwing out tests like CD57, Genova nutraeval, stool tests etc...and I nearly kissed him on the mouth. Yeah, I like visiting family in Michigan, but would only move if health-care was better...maybe someday?
     
  6. Lipac

    Lipac Senior Member

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    o_O uh, someday after I'm dead? Lol :)
     
  7. Aerowallah

    Aerowallah

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    Lipac, did you read my post? I had normal glutamate but, like you, am sensitivite. A FRACTION of the taurine you are now taking elevated my glutamate levels substantially within 90 days and switched on 18 months of insomnia which I never had before.

    https://www.ncbi.nlm.nih.gov/pubmed/18605241

    The insomnia you describe is the calm overalertness of elevated glutamate. The panicky elevated heart rate is usually elevated adrenaline.

    Gaming your neurotransmitters while we scratch the surface of how they work is problematic as I learned. Eventually you will develop a tolerance for trazodone. Have you tried avoiding high glutamate foods? Are you monitoring your glutamate levels to see what affects them?
     
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  8. Lipac

    Lipac Senior Member

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    @Aerowallah yes I discovered my glutamate sensitivity quite by accident in 2016. I'd been taking glutamine for a severe gastritis. After a couple of months, I had true anxiety attacks with NO history of ( my mind was thinking, " I have nothing to be anxious about. What's this about?"). I went through every supplement and find the glutamine/ glutamate connection. I knew msg gave me migraines etc already so didn't eat out much or buy processed foods. Since then, I've used glycine and Taurine.
    I need quite large doses of Taurine, I have more problems if I run out and don't take it.
    I need a lot of protein ( animal is best for me) which often has a lot of glutamine. I take Taurine before my whey shake etc. Other high glutamine/glutamate foods I avoid entirely. I don't eat protein after 3 pm.
    This insomnia also goes back through the women on my mom's side to my great grandmother. ( My DNA tests said I should sleep better than average, so perhaps this is a unique familial snp). One aunt died as a result.
    I've had problems since age 7-8. Summers, as is the desert, were better.
    It's so multifactorial.
    It's my biggest health risk at 60, but Drs haven't taken it seriously. Sleep clinics tell me I have no disorder because they don't have a diagnosis.
    I've gone a year on 2-3 hrs a night. 10 days with 1 hr every 36hrs. 5 days with ZERO sleep. No hallucinations, no mania, just a bad tremor and so fatigued I can't walk.

    That's how my aunt died.
    She collapsed eventually at work, and never really got better.
     
    Last edited: Jan 18, 2018
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  9. Aerowallah

    Aerowallah

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    Sounds like you need to unpack this protocol. There is probably a better way to achieve similar results without imbalancing your brain chemistry further with large doses of taurine.
     
  10. kaffirlime

    kaffirlime

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    Lipac, hello! I also believe glutamate issues has to do with the brain hyperactivity. I found sarcosine to have very clear effect on my mood instantly (dimethylglycine). I am also sensitive to all MSG, mold and many other things. I'll try to keep taking taurine. Do you take the taurine 3g in divided doses or all at once?

    I have tried trazodone, but it really doesn't put me to sleep, sedates only. I have been thinking about cortisol issues, I used to have low cortisol years back and took HC for a couple of years, then quit. I remember when taking HC in a day that I felt sleep deprived it made me feel better. But next day can get cortisone hangover plus anxiety issues. I don't know if I believe in saliva cortisol testing.

    It's funny how the exercise affects sleep, and somehow exertion changes body rhythms and cannot fall asleep, staying in some kind of wakeful mode. If I stay home and do nothing for a couple of days it gets slightly better. After being several nights on "dog sleep" I really would take anything to knock myself out.
     
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  11. PatJ

    PatJ Forum Support Assistant

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    @Hip You may be interested in this comment.
     
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  12. Hip

    Hip Senior Member

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    Yes, high brain glutamate has been proposed as the cause of the over-stimulated "wired" mental state found in ME/CFS. Lots of glutamate is pumped out by activated microglia in the brain, so this could be the source of the proposed high brain glutamate (microglia become activated as part of the brain's inflammatory immune response).

    You might find this thread of interest:
    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state



    I have yet to try sarcosine (N-methylglycine), although I have tried trimethylglycine (TMG), and found this triggers depression in me, as do other methyl donors like SAM-e and betaine hydrochloride.

    It is possible this may be because methyl donor supplements increase the alpha interferon response, and interferon can cause depression. More info about this here.
     
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  13. kaffirlime

    kaffirlime

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    I wanted to add that be very careful with the sarcosine. I had severe blood pressure elevations from very small dose, my BP rose up to 160/100. So I don't know if I can recommend it. It gave me euphoric feeling at first, then panicky feeling. I read it has caused BP problems for others as well.
     
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  14. PatJ

    PatJ Forum Support Assistant

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    Were the problems always related to higher BP? That could be a benefit for some of us with low BP.
     
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  15. kaffirlime

    kaffirlime

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    It made a funny sensation in my head and then this big blood pressure elevation and heart beating 140bpm. Felt stronger for a while right after taking it with improved mood. Not sure if there were any other issues with it.
     
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  16. Avena

    Avena

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    How long have you been on Lyrica? My insomnia have never been worse than when I was on Lyrica...
     
  17. percyval577

    percyval577 Remember

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    When I only sometimes couldn´t sleep, I tried coffee - well, it´s top or hop, if you won´t fall asleep within some time (this differed from 10 minutes till 20, sometimes up till 45, best with reading something) you will not sleep. Mostly it worked well, but it was always a decision to make again. It does not work with tea.
    Andyguitar put, not to turn off light. This worked for me as well. It could be al kind of light, in the floor, in the bathroom, a darker one and so on. It depended sometimes on the mood I was in.
    For three months I couldn´t sleep at all. I was completly clear and like a stone. The next day I didn´t feel cold as one should have supposed and could work as before.
    After this I needed to sleep with one ear closed otherwise I would wake up from any little noise with no return to sleep.
    Now I sleep well enough but I ´m still lacking the nice mood to think with the things that had happend the day.
     
    Last edited: Feb 18, 2018
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  18. Wayne

    Wayne Senior Member

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    Hi @Hip, @PatJ, @kaffirlime,

    Hip, I was wondering if you ever got around to trying sarcosine. I just ran across this blurb... (LINK HERE)

    ""Sarcosine has a distinct mild, sweet flavor. An ingredient of toothpaste for decades, it prevents cavities and causes foaming [R]. --- It is also a promising biomarker for prostate cancer. Sarcosine may be able to detect the early stages of prostate cancer, unlike the currently used biomarker (prostate-specific antigen or PSA) [R, R]. --- Sarcosine has other surprising health benefits. Studies over the past 2 decades uncovered its role in treating mental health disorders, including schizophrenia and depression [R, R, R].""
    I'm (somewhat desperately) searching for something (anything) that might improve my recently acquired severe tinnitus. I've read that different drugs used to treat schizophrenia have either improved or completely eliminated tinnitus symptoms.

    In this same regard, I'm curious about your thread you did on amisulpride. Are you still taking it? I'm ready to give that a try as well, and was wondering if you've found a favorite supplier (for reliability and price). -- Thanks much!
    ....................................................................

    From the Sarcosine Article:
     
  19. Hip

    Hip Senior Member

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    Sorry to hear you have developed this symptom.

    Yes, I am still taking amisulpride 12.5 mg daily. Higher doses seem to cause a sort of mental numbness or vagueness, so I stick to that very low dose. I buy most drugs from www.buy-pharma.md these days, but other amisulpride suppliers are listed on my amisulpride thread.



    Sarcosine has been on my list of supplements to try, but I never got around to buying some.
     
  20. Stretched

    Stretched Senior Member

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    Has anyone tried Kratom red strain? Another member swears by it as a godsend! I’m looking into it. There a forum at r/Kratom on reddit.com. It’s supposed to
    ease pain and help sleep = 8 hours! Seems like users are kind of hush-hush about this borderline stuff.
     
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