The 12th Invest in ME Research Conference June, 2017, Part 2
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Insomnia is driving me nuts...

Discussion in 'General Treatment' started by alice111, Jul 1, 2015.

  1. alice111

    alice111 Senior Member

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    Just when I think I get a hold on it, it comes back...

    1am, 2am, 3am... Still awake :(

    The problem is seem to keep building up a tolerance to everything I take (pharmaceutical, and natural)!

    I have tried rotating so I don't take the same thing every night, but this doesn't seem to help

    Currently I am taking the following (rotating them)
    -Benadryl
    -gravel
    -klonopin
    -Ativan
    -oxazepam
    -mirtazipine

    Every night I take
    -melatonin
    -cannabis oil
    -California poppy



    Pleeeaaase if you have suggestions??!! I feel like I'm going to go crazy staying up so late just lying there, and then even when I get to sleep it's such poor quality...
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    It looks like you are just counting on one thing to keep you asleep all night long. All of which develop tolerance pretty quickly. And of all of them ativan scares me the most.

    What works for me is layering. I need a benzo to initiate sleep, (ambien, halcion, oxazepam) plus trazodone and either seroquel or doxepine, then I take any one of 3 otc antistimines.

    I also use Tizanidine, Kava, passion flower, suntheanine and phenibut since I always wake in the middle of the night and need something to go back to sleep.

    I also take DMX per @heapsreal advice since it helps with tolerance.
     
  3. AaroninOregon

    AaroninOregon noob

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    Insomnia...ugh. :(

    @alice111 are you having trouble initially falling asleep or are you waking up at 1 am and can't fall back asleep?

    My sleep doc gave me a script for zaleplon (sonata) for when I wake at at 2 or 3 am to knock me back into sleep for up to 4 more hours.
     
  4. alice111

    alice111 Senior Member

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    It's both sometimes.. But mostly it's the initiating. I'm so ready to fall asleep, tired, sleepy.. But I just can't get over that edge into sleep!
     
  5. AaroninOregon

    AaroninOregon noob

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    I hear that.

    Looking at the meds that minkeygirl listed, seroquel has a heck of a knockout punch...I use it when I really need a solid 7-8 hours of sleep.
     
    alice111 likes this.
  6. Mary

    Mary Senior Member

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    @alice111 - have you had your cortisol levels checked? If they are high at night, this can cause insomnia that almost nothing will touch. 12 or 13 years ago mine were quite high at night causing severe middle of the night insomnia. I started taking Seriphos (phosphorylated serine) and started sleeping better almost immediately. I discovered that when taken at night, Seriphos worsened my insomnia, but taken in the morning, on an empty stomach, it worked great. It did not make me sleepy during the day, just calmed me down.

    Having said that, I still have to take several things for sleep, but believe if I hadn't addressed my high cortisol, these things would not help:

    glycine - this is really good, it can help you fall asleep, and when I wake up at 1:30 or 2:00 it helps me get back to sleep - I take 2000 mg. before bed, and 1000 in the middle of the night. I just dissolve it in water or you can get capsules.

    Natrol sublingual melatonin - 4.5 mg. before bed, 3 mg. middle of the night

    choline/inositol - 500mg. before bed, and 500 mg. middle of the night

    l-theanine - 100 mg. before bed, 100 more middle of the night

    theanine serene - this has a lot of l-theanine and GABA and holy basil and taurine and maybe something else - I take 2 of these in the middle of the night

    niacin - this helps activate GABA receptors - I take 500 mg. after dinner (the flushing kind), and 300 mg. more middle of the night. Yes, it can interfere with methylation but it works for me doing it this way. I don't take it during the day.

    5-htp - 100 mg. before bed

    lorazepam - 1 mg. middle of the night

    And of course magnesium and calcium -
     
    alice111 likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

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    This is me to a T. I think I am on a roll of sleeping and boom, I am then not sleeping. The last 2 nights I have had no sleep no matter what I take.

    I agree with what others here say. Rotating, etc, but I also feel that sometimes our bodies are such a mess that no matter what we take, we will not sleep. Sometimes, I just cut back on meds and fall asleep.

    Doxepin put me to sleep, that's for sure, but I awoke exhausted and gorged on food. Seroquel also put me to sleep, but I didn't like the way I felt on it. Ambien I like, but it doesn't keep me asleep.

    I am sorry I am not answering your question. I would love the answer to this as well. The million dollar question.

    Melatonin keeps me awake and so does cannibis or pot. Could that be happening to you, I wonder?

    Tizanidine and Ambien put me to sleep and Ativan is the best, but I can't take it a lot due to wanting to keep taking it.

    But again...sometimes the illness just acts up and there is no getting around...not sleeping.

    Sometimes a lot of meds in combination causes me to not sleep. Tizanidine mixed with some meds keeps me awake. We are all so different.

    It will pass. I keep telling myself that as well.

    My cortisol is high at night and I never want to go to bed until around 3 pm. I would love to change that, but am intolerant of Seriphos. Theanine and 5HTP keeps me awake with never ending nightmares. High cortisol at night, if you have it, has been extremely hard for me to tame. However, years ago, L-Serine worked to help me to sleep and I have been wondering if I should try it again.

    Methylation...doing the B12 and folate...it kept me up.
     
    Last edited: Jul 1, 2015
    AaroninOregon likes this.
  8. alice111

    alice111 Senior Member

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    I dint know if this answers the cortisol question, but all the saliva tests I have done over the years have actually shown LOW cortisol for the bedtime measurement. (Like out of range low) so I don't know how accurate this is.. Maybe it drops then kicks in again? Not sure. I will try the advice of taking PS in the daytime!
     
  9. AaroninOregon

    AaroninOregon noob

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    I don't know a lot about cortisol, but from what I've read, it's possible that one's circadium rhythm can get out of synch and the body can up cortisol output earlier than it should.
     
  10. ahmo

    ahmo Senior Member

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    pituitary glandular worked great for me when I became intolerant to low dose Klonopin.
     
    minkeygirl likes this.
  11. AaroninOregon

    AaroninOregon noob

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    How much do you typically take and how long before bed time do you take it?
     
  12. SDSue

    SDSue Southeast

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    This is not going to help you sleep, but perhaps it will be useful? I use “Sleep Cycle” app on my cell phone. It is literally the best $1.99 I’ve spent in fighting illness. (Well, this and my IgG food allergies, but that’s another story).

    It allows me to track as many variables as I choose. Over the course of a few months, I’ve tracked several drug combos, activity, stress, time of last meal, and more. I have been able to figure out what’s helping and what’s not by using the graphs and charts that are auto-generated with my data. See here for samples. Turns out my guesses and hunches were wrong.

    I feel your pain. Here’s to a good night’s sleep! :wine:
     
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  13. Mary

    Mary Senior Member

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    I have the same questions as @AaroninOregon - how much did you take and how long before bed - also, what brand did you use?

    I've thought of taking pituitary glandular off and on but have never tried it -
     
  14. Kathevans

    Kathevans Senior Member

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    I'm reading this with great interest. My sleep is a mess just now. I was much better before I ever tried to tamper with my methylation issues. I was getting a good 4-7 hours sleep a night. Usually averaging about 6. It was quite tolerable in retrospect... OTOH, my pain was increasing and I felt the need to try to improve things. Oh, the best laid plans...:(
     
  15. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    3 keys I unlocked to cure my personal insomnia hell:

    Is your blood sugar well-balanced?

    Are your thyroid levels in range? (If your thyroid is low, your body will often crank up the adrenaline to compensate)

    Do you have plenty of Vitamin B6? (You need enough high enough dose of this to have dreams on a regular basis)


    looks into these before loading up on tranquilizers or sleeping pills... it may eliminae the need for them
     
  16. minkeygirl

    minkeygirl But I Look So Good.

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    @AaroninOregon i only take 25 mgs seroquel.

    Those if use with epic insomnia can take lower doses of stuff

    Otc stuff is like a sugar pill to me. Worthless on its own.

    @Sherpa. Many of us just can't sleep. If I took nothing I would never sleep.

    It's easy for others to say oh take B6 or glycine or GABA. For many of us they just don't work and we need drugs.

    I don't like it but I have no choice.
     
    SDSue likes this.
  17. AaroninOregon

    AaroninOregon noob

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    25mgs of Seroquel is usually enough for me as well...when I' ve had severe insomnia l have upped it to 50.

    I've never tried benadryl, but Unisom(doxylamine succinate) works sometimes.

    Melatonin doesn't a thing for me though.
     
  18. ahmo

    ahmo Senior Member

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    I was taking 1 pill at bedtime. Raw Pituitary. I had pretty terrible insomnia: getting to sleep, staying asleep, returning to sleep if I wakened. I'd used different strategies, including vibrational sound recordings, movement sequences designed to stimulate sleep, Calif poppy, valerian, cannabis. These things helped me relax to varying degrees, but pituitary seemed to make a world of difference. And I began it when my nervous system was still a mess, before I quit gluten, and so on. When I got up to theraputic doses of B12, my life-long tendency to insomnia, and the chronic condition it had become, resolved. It's now been over a year that I go to bed and go to sleep. :)

    Before I decided to try the pituitary, I'd had excellent results supplementing hypothalamus and adrenal glandulars. These helped my deranged nervous system A Lot, before removing gluten and getting onto the healing path. So I was treating all the points of the HPA axis.
     
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  19. AaroninOregon

    AaroninOregon noob

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    Thanks @ahmo!
     
  20. minkeygirl

    minkeygirl But I Look So Good.

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    @Aaron1103 FYI you can buy doxylamine for about $5/ bottle of 90 on eBay and amazon.

    I also use the active ingredient in Chlortrimetron that you can also get for much cheaper

    Also I used to love Benadryl but it can cause tachycardia.
     

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