Julie Rehmeyer's 'Through the Shadowlands'
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Insomnia ideas?

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

  1. debored13

    debored13 Senior Member

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    Vermont, school in Western MA
    i've tried that, my insomnia is far past that. tonight i stayed up all night simply to reset my sleep clock. would try trazodone but it seems drastic
     
    Lipac likes this.
  2. andyguitar

    andyguitar Senior Member

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    Ok here's another 2 ideas. Hot water bottle on your feet. Asprin tab or ibuprofen tab. Theory is abnormality in body temp control causes sleep probs, tabs normalise it.
     
  3. debored13

    debored13 Senior Member

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    Vermont, school in Western MA
    interesting
     
  4. andyguitar

    andyguitar Senior Member

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    Give it a go. I know it sounds a bit simple but sometimes the simple things work best. Oh i forgot to mention a very old idea my late grandad used. Lettuce sandwich half hour before bed.
     
  5. Aerowallah

    Aerowallah

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    Hi, there

    Insomnia was my biggest curse while trying to heal.

    I gave up trying everyone's suggestions of sleep aids. If you don't know what's causing YOUR insomnia you could imbalance yourself further.

    I finally got a saliva / neurotransmitter test and found out my glutamate had become elevated over a baseline reading. Taurine (in a sleep aid!) which had built up with my sluggish liver clearance had a glutamergic reaction.

    BTW insomnia feels different depending on what's elevated.

    Knowing glutamate was elevated I cut out high glutamate foods for awhile. Now I was sleeping an extra hour or two a night. Check out other problematic food groups that people are allergic or sensitive to against your own diet and you might get clues.

    Another safe safe thing you can do is bring down general inflammation. That helps everything including a chronic stress response that makes sleep worse.

    I suffered 18 months with an average of two all nighters in 10 until I tried coffee enemas which really helped liver clearance and took away the all nighters. But I hesitated for 18 months getting into CEs!

    Then to my surprise a low-dose version of Fredd's methylation protocol actually calmed me out and now I was sleeping until 4 or 5 am most nights.

    Then I added diatomaceous earth to help with general detox and the CEs. Add one more hour of sleep CONSISTENTLY. Now I'm sleeping until 5 or 6.

    Then I added a drop of Lugols 3% iodine for various reasons and found that helped me sleep even longer and later.

    Insomnia is now in the background for me--when I am trialling some new nutrient, too much usually brings it back for a day or two until it's cleared. Too much B12 still brings it back, while the right amount for me is calming.

    A whole bunch of nuts and seeds late at night is a lingering food issue for me. These are high in glutamate + copper + histamines which are all suspects in insomnia.

    Good luck! It's an individual process of unwrapping your own issues but detox detox detox is always a good start.
     
    Wayne, Lipac, Awags1986 and 1 other person like this.
  6. heyitisjustin

    heyitisjustin Senior Member

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    CBD helps me too. Is there a reason why you take it with meals? I've been taking 8-12 drops an hour after dinner and wonder if it would be better to take with meals.
     
  7. Mary

    Mary Forum Support Assistant

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    The first time I tried CBD oil I took 15 drops before bed and I felt drugged and just generally bad the next day, so I'm sensitive to high doses. After experimentation I found I tolerate taking small doses during the day and taking it after meals is just easiest to remember. I could probably do it in between meals but I take pills anyways after meals so it's simplest for me that way.

    We're all different and if it works for you taking 8-12 drops after dinner, I'd keep doing it :)
     
  8. Lipac

    Lipac Senior Member

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    I've had severe insomnia since about age 8.
    I am 60.

    In my thirties I tried everything commonly used- amitriptyline, other meds that aren't controlled, herbs, nothing helped.
    In my fifties, was given rhohypnol and medical marijuana- was awake dizzy all night. Hypnosis, other therapies do nothing. Sleep tapes nada.

    I now know I'm extremely glutamate sensitive- I take Taurine 3 g a day and some glycine to block glutamate receptors, but am still jolted awake after 3-4 hours sleep. There are no cardiac or sleep apnea etc problems.

    It sounds like your description.

    I was sleeping about 2-3 hours a night for 9 months after having a baby at 40- sympathetic stimulation jolted me awake in spite of baby sleeping.

    Clonazepam was a wonder drug. I've been off it multiple times in 18 years always with disasterous results. I'm doing everything right sleep hygiene and diet wise.

    Now a new Dr doesn't want to prescribe Clonazepam. Tapering the dude is putting me back into the husband/ chronic pain, weak state I lived in for years.

    Valerian with hops and Passion flower aren't helping.

    I tested positive for Lyme; know I had it at least 3 times before age 17.
    I think this is a central neurological problem, like MS.

    If I sleep, everything goes away.

    Any new news for those of us whose main problem is no sleep?

    I'm in MI and can't afford to leave, or go to ANOTHER private CFS clinic across the country.
    (Regular pcps won't read or accept the assessments anyway )

    I had 3 years in S CA where I slept well.
    Everything resolved..
    I can't get back there financially.
    I don't sleep in Northern Climates.

    There also are NO knowledgeable CFS Drs here that I can find.

    CBD and LDN don't work.

    I also take melatonin, Benadryl, Lyrica and progesterone at night. Limit to and computer has blue light filter, memory foam bed...et Al.

    Any other Drs, tests, therapies for severe insomnia - suggestions would be great.
     
    Wayne likes this.
  9. Lipac

    Lipac Senior Member

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    Add: I also take everything known to reduce quinolinic acid ( neurotoxin in all cns inflammatory diseases) since mine has been high since the beginning 20 y ; I thought it probably contributes to the insomnia, though I can't find any research.
    I also researched how to manipulate orexin activity and follow that ( some simple carbs and no protein after 4 pm, protein in the AM, etc)
     
  10. Lipac

    Lipac Senior Member

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    LDN at night has " insomnia" listed as a side effect. I tried taking it am but that's not effective in the research. I guess it works for people without SEVERE insomnia ( I've gone 5 days with NO sleep. 10 days with 1 hour every 1-2 days. Both when I ran out of meds . It's not mania as I can barely move. No hallucinations. I finally went to ER.)
     
  11. Lipac

    Lipac Senior Member

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    I began using the DUTCH urine 24 hour hormone test instead of saliva; two Drs recommended it.( You can self order it) I don't have high cortisol and melatonin was high.

    5-htp made me worse. I know now it's converted to quinolinic acid, just like Tryptophan.

    I do better if I can get 5 mg hydrocortisone in the a.m. ( no functional or Naturopathic Dr here).

    It's good to know your hormone cycles, though DUTCH can get complicated. Results are pretty straight forward.

    Taurine, Taurine, Taurine. Lol.
    Can't remember all the places I found it in research- multiple.

    It cuts anxiety rapidly too, quite rapidly, btw, if that's a problem.

    I had many problems when I took glutamine for a bad gastritis a few years ago; which is how I found out about glutamate sensitivity, glycine and Taurine ( I knew about msg. Didn't know about high glutamate foods.)
    I ruined high glutamate foods, and if I eat them ( whey protein, bone broth) I take 1 g Taurine before, and don't eat then okay about 2 pm.
    It helps.
    My severe insomnia still needs medication though.
    I try to help my body by eliminating stimulants like glutamine and aspartic acid.

    A CFS clinic told me 15 years ago Id need sleep medication the rest of my life. I now understand why.

    Too bad regular Drs think I just want " drugs" and don't get CFS at all.
     
    Wayne and Mary like this.
  12. Lipac

    Lipac Senior Member

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    I thought methylation / detox was a problem as well. It didn't help.

    Last month I got my DNA results and have no methylation defects.
    DNA tests are pretty important when the illness gets debilitating.
    Genomic medicine is great, should be used as preventative medicine in the teens/20 s.

    It helped guide what I focus on, but doesn't answer immunological/ inflammation issues.
     
    Sundancer likes this.
  13. Lipac

    Lipac Senior Member

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    @Awags1986 This began in my thirties and I couldn't work two mornings in a row.
    I'm now 60. Sleeping in a quiet desert location was all that helped- go figure. I will always need clonazepam to not be bedfast-20 years trial and error. I do all the sleep hugeness and other aids, but even in the very beginning, stopping clonazepam drive me to bring bedridden after 9 months without it.

    The trouble is finding an MD willing to prescribe it now.
    My dose hasn't changed in 12-15 years.

    This pattern had been with me so long, I don't think it's going to change.
     
  14. Lipac

    Lipac Senior Member

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    @debored13 . I also have Lyme- I'm 60, had it at least 3 times before age 17. CFS hit debilitatingly at 43. Your sleep issues and sleep aid trials sounds similar to mine . I think it's chronic cns inflammation. (?) Even my Lyme doc had no solutions.
    The desert of S CA and a very good bed/ quiet dark nights helps- no one knows why. Unless it's the stimulation of bright early morning light and sudden darkness without twilight, like in N latitudes where I've always lived. I needed less medication , slept 8 hours, and awakened refreshed at 6 am. Even my mother was amazed- said that hadn't happened since I was 8.

    I wish there was " Shared Housing" in these $$ places for CFS/ chronic illness people.
     
  15. Lipac

    Lipac Senior Member

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    @debored13 ( I DON'T PRACTICE MEDICINE NOW DUE TO CFS; I RETIRED MY LICENSE. THESE ARE HISTORICAL EXPERIENCES)
    When I DID practice medicine, we gave trazadone first line to everyone complaining of insomnia ( after a brief screen for things like apnea , too much caffeine, etc).

    It's not drastic.
    NICE if it works for you
    ( it doesn't for some ).

    A really better option than benzos or z drugs, better even than long term use of antihistamines.

    It works in doses lower than used for depression. Drs still try it first line , Esp if a patient doesn't appear to have sleep apnea signs, has good sleep hugeness, normal hormones, and isn't psychotic. Lol.

    If it works, you could probably get any Dr to happily prescribe it, unlike most sleep aids.
     
  16. Awags1986

    Awags1986

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    Oddly enough Clonazepam doesn't touch me. I take it and feel like I took a sugar pill...Not a bit of sedation. Same with Valium. I've tried CBD, melatonin, Valerian, magnesium, adjusting b vitamins...etc. I have really good sleep hygiene...I only have issues when in symptomatic, which ranges between 3-6 nights a month give or take. I do have POTS which I was just diagnosed with, but not currently being treated. My electrophysiologist isn't comfortable treating. I do wonder if treating that would help. I drink lots of water and increased salt intake as of now...that doesn't really help the tachycardia and insomnia though....bleh. I'm going to a psychiatrist for the first time (reluctantly) and I was told by her nurse that she prescribes trazadone so I'm not sure if that's a route I'm willing to take...
     
  17. Lipac

    Lipac Senior Member

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    Everyone is different. I WISH Trazadone would work for me. It just makes me dizzy all night.

    A Big Warning about psychiatrists.
    Please be cautious about seeing one.

    #1: You don't need a psychiatrist for Trazadone.
    It's the first thing a Dr or PA or FNP will offer for insomnia because it's not addicting or a controlled substance, and there's not an overdose risk at the low dose they give.

    #2: Personally, I'm much more afraid of psychiatrists than Trazadone..
    Seeing one first (when I woke up I'll and couldn't move), RUINED my care for 9 years. I went ( on my own) to two psychologists and got normal evaluations.
    It made NO difference, Till went to private Drs.
    The stigma and inaccurate diagnoses followed me 9 years. I was treated badly by PCPs who said " you're in denial about your mental illnesses".
    I had none.
    It was based on ONE visit to a Psychiatrist who I told my symptoms of muscle weakness, dizziness, exhaustion and hormone irregularities to, but who labeled me, and ordered NO testing.

    No one questioned or amended his " impression".

    Psychiatrists DON'T DO ANY TESTING. IT'S ALL A SUBJECTIVE IMPRESSION.

    Unless they are unusual ( like Dr Amen) and do brain imaging, and test hormones , heavy metals, etc they don't even do PSYCHOLOGICAL tests.
    I saw how poorly patients were treated after they'd seen a psychiatrist.

    Unless a person is suicidal, an addict or clearly mentally ill...a Psychiatrist is the LAST place a Chronically Ill person should go, IMO.

    Just get a regular provider who believes CFS is real to give you a trial of Trazadone.
    It'll work the first night if it's going to.
    It's like taking ibuprofen for pain- it'll either work or not.
     
    PatJ likes this.
  18. Awags1986

    Awags1986

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    I've literally switched PCP's 4 times in the last few years, and because I live in the armpit of America they all suck. My current PCP refuses to run anymore tests until I get my "hypochondriasis" under control. All this because I ask for specific labs to be run, and do my own research...I could try AGAIN to get another PCP, but I'm not sure I want to go through all the effort again just to be wildly disappointed...though, I may luck out and find the diamond in the rough...
     
    Last edited: Jan 16, 2018
    Lipac likes this.
  19. Lipac

    Lipac Senior Member

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    @Awags1986 I'm going through the Same thing. I'm talking too much about myself, but I have your situation in mind. You sound so much like me, but I'm 69, and have dealt with these issues almost 20 years. I think you're younger, which is to your advantage.

    ( Digression, but an idea..
    .I just asked for a PT referral to the hospital PT. They know I'm to be treated like an MS patient and will do THEIR OWN evaluation. I'VE FOUND THEY CAN HELP WITH A DIAGNOSIS.
    If they demonstrate muscle weakness OBJECTIVELY, that's a strike AGAINST the "hypochondriasis" theory.

    A Physical Medicine Dr helped me in the past too, if you can find one. Sometimes called a Physiatrist. MUCH more understanding. He was sure I had Myasthenia Gravis, tested me, kept testing, till he retired... He gave me hope because he BELIEVED me, and talked to me on an intelligent level- never condescending or confrontational like everyone else was at the time. Plus, he understood exactly how I was being treated by other Drs and just shook his head- he told me that's why he got out of Family Practice- the attitudes toward Chronically Ill people .

    Maybe you could get a referral for " being deconditioned" and take it from there.

    BTW- none of the community PT places were helpful. The hospital PTs who see Chronically Ill people understand)

    All the good Drs have left or retired in my home state that I had to return to ( no money left to live on my own out West, with better Drs everywhere).
    The only " functional medicine" Drs are wacky, or are overly focused on one treatment- usually something outdated that the Drs and NDs stopped doing 18 years ago in WA/OR/CA...

    I think Drs in my state know they can get away with inferior care, labeling patients inaccurately, etc because THE PEOPLE LEFT Here ARE UNEDUCATED.

    So...I know what you mean.
    ( I've been wondering if we're in the same area by your posts !)

    I've had 5 PCPs since August... Not my choice- thiers. You'd think CFS was a complicated, rare illness.
    ( Some have told me my case is " too complicated")

    So, I empathize.

    Please ... don't continue with a Dr who BELIEVES you have a psychosomatic problem. IT'S NO DIFFERENT THAN BEING MARRIED TO AN ABUSIVE SPOUSE- Don't Stay because you have no options.
    Look for a way out, just as you would a bad relationship.
    If you keep seeing a Dismissive provider, YOU WILL GET DEPRESSED AND LOSE HOPE.

    Please keep looking.
    Google " functional medicine doctors in my area"- you might find one.

    Unfortunately, I can't find anyone.
    I'm being thrown back to the kind of thinking I encountered 18 years ago when I first got sick.

    I haven't been " labeled" since 2009.
    It's a big shock to feel I've gone backwards.
    It's a fight not to have PTSD-type anxiety and fall apart with disbelief and frustration EVERY time I see a Dr now.

    I GOT AWAY FROM MEDICAL ABUSE, TO PLACES WHERE I WAS BELIEVED.
    I DO NOT WANT TO GO BACK!!

    The MAs are even hostile. They tell me " no one complains as much but as you and is on these needs" ( I want to ask where they got a Medical Degree...)

    I'm telling confrontational office people, that " people like me" are most likely stuck in bed somewhere and never leave the house; THAT'S why THEY'VE NEVER SEEN THEM.

    My housing is insecure. I live with a relative who isn't happy about it. The snow is very deep, it's extremely cold- being homeless in a tent here is not an option.

    The hospital signed me up for MEDICAID, ( without me knowing) because I've gone 8 years without insurance in other states.
    It has made things WORSE. No educated women are in Medicaid, unless they are psychotic.

    The trade off if staying in a state where the regular Drs are undereducated; and no good private Drs can make a living, so there are none.

    The CDC has even changed the explanation of CFS! I guess no one here is reading the info. It's appalling, truly.
    I think I'd get better care in Mexico.

    I was hoping you lived in a state like Oregon...

    Please get away from psychologically abusive Drs.
    That's what it is.
    It's no different than the Sociopathic Dr I was married to.
     
    Mary likes this.
  20. Lipac

    Lipac Senior Member

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    I'm 60... Not 69 yet!
     

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