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ME/CFS: A disease at war with itself
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suggestions on what has worked for sleep?

Discussion in 'Sleep' started by Aerose91, Apr 3, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    My sleep sucks. My doctor said that the dysautonomia is a large cause of it but regardless I can't sleep. One thing is that my patterns change all the time though; I may have a twisted circadian rhythm for a few months, then the next few months I'll sleep 10 minutes on/15 off, then I'll switch to hypoglycemia all night, then random adrenaline rushes etc..

    Either way things just change at the drop of a hat so it's hard to tell what I need because it's always different. I can't take benzodiazepines because I took ativan 2 years ago and still haven't recovered from the hell that pill put me through, but whenever i ask my doctor about sleep he just tries to give me benzodiazepines despite me specifically telling him i can NOT take them.

    So I'm at a roadblock, here's the things I've tried that have no effect:

    Blue light therapy
    Meditation
    Earthing mat
    Doxepin
    Magnesium, fish oil
    Melatonin
    Valerian
    Prozac

    Things that help me slightly:

    NyQuill
    L-Theanine
    Prazosin

    ^^ These things calm me down slightly but not nearly enough to cross the barrier into sleep and even more so- to stay asleep. Also I'm very good about my blood sugar being correct.

    It seems like benzodiazepines are the most widely used drug for ME but thats not an option for me. I've been very hesitant to try drugs because of how sensitive I am and how quickly my body becomes reliant but at this point I may have no choice. Is there anything that isnt, like, and anti-psychotic that is pretty well received across the board? I feel like if I can get some regular sleep I may have a fighting chance at some sort of recovery.
     
  2. tdog333

    tdog333 Senior Member

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    I tried almost everything except RX sleep aids. Everything has the opposite effect on me and makes me wired. Things that actually work: Calms forte by hyland are good, but only if the problem is shutting off your mind. Tryptophan 1G, GABA 1G and 3mg melatonin work pretty well. It's not perfect but a very good improvement. The combo works best. Melatonin by itself did nothing for me either.
     
  3. Aerose91

    Aerose91 Senior Member

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    Yeah my mind isn't the problem. My thoughts aren't spinning nor do I have anxiety. Its my brain and body that are wired.
     
    soxfan likes this.
  4. tdog333

    tdog333 Senior Member

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    Yep same, try the tryptophan gaba melatonin combo and see if it helps. I was pretty desperate and only getting an hour or two a night. I'm getting a lot more now.
     
  5. Aerose91

    Aerose91 Senior Member

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    I've been.combining Theanine NyQuill and Prazosin, I'll try those next. Thanks
     
  6. Martial

    Martial Senior Member

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    Look into things to lower quin acid and glutamate, could be possible that its acting neural toxic in the brain and stimulating the neurons to make you feel the stuff you mentioned. With certain chronic illnesses and toxicities, as well as sleep deprivation and oxidative stress these things can become quite a problem.

    There are certain vitamins and herbs that help with this, also dietary things you can do. I remember you mentioning having glutamate toxicity before, so seems you are sensitive to it for whatever reason as of now. Perhaps leaky brain barrier? I may have same issues, there are also things you can do to fix this as well.
     
  7. Aerose91

    Aerose91 Senior Member

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    I had/have glutamate toxicity from benzo withdrawal 2 years ago that still hadn't healed, unfortunately since getting ME it has gotten a lot worse.
    I have a feeling the GABA effect of Theanine is why that helps me so it would stand to reason glutamate is a problem. I generally eat low glutamate foods for that reason but that stuff doesn't seem to be enough on its own.
    I would also agree that I have a leaky BBB since I got encephalitis. Hopefully I can produce a cocktail to get things under control
     
  8. Martial

    Martial Senior Member

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    Yeah there are plenty of options for you to get that under control, good to know you have access to the right info and can be much more capable of healing then previously in history, man treating stuff like this without modern day advancement would just be a nightmare, just a bunch of darts thrown in the dark.
     
  9. Aerose91

    Aerose91 Senior Member

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    God I can't imagine. Some times I wonder- did diseases like this even exist 100 years ago? Or are these nature's attempt at population control in response to our modern day lifestyles. I kind of am of the.belief that nature always has a way of evening itself out
     
  10. Martial

    Martial Senior Member

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    Well some would say it did not exist prior to issues of modern lifestyle, too much stress, toxicity build up, etc.. I would say this is not true as people were exposed to plenty of hazardous things throughout history, and usually diseases would spread like wildfire and mortality rate was much higher. There was also plenty of stress from wars, conflict, etc.. Though not having so much electronics, pollution, radiation, etc. probably works in their favor, also still not as much stress as people encounter today either.

    I don't think nature is trying to weed anyone out though, if anything it is better to know your BODY can take care and even itself out, but this is where giving it the correct treatment and therapy is so necessary. The human body is extremely complex and not nearly understood as a totality from the medical society today, it is in fact one of the most amazing mysteries this planet has to offer..

    If nature were to induce population control I am pretty sure it would throw us into another ice age, with all the destruction mankind has done to the environment recently I wouldn't be surprised if something like that were to happen lol. I really do enjoy humanity as a whole though, and this gorgeous earth so I hope it all sticks around for a good while. Even with the parts of society that are insane, and the conflict and strife, this is just a small portion of things and there is so much greater good happening always, so much potential and possibilites :D
     
    Tammy and searcher like this.
  11. Calathea

    Calathea Darkness therapy

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    Darkness therapy is the only thing that really works for me , though light therapy is what stopped the Non-24 Sleep-Wake Disorder. I wrote a site about it, look up insearchofmornings. Tell me more about how you were using the blue light, please?

    A lot of supplements can interfere negatively with sleep, so that's the first place I'd look in your case.
     
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Since you are sensitive, have you tried herbs. You can start with teas. If those don't work, you can move on to/add pills. Many of us find that moderate doses of several different things help.
     
  13. Iquitos

    Iquitos Senior Member

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    Medical marijuana has helped me tremendously with sleep.
     
  14. Aerose91

    Aerose91 Senior Member

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    @Calathea

    I try to stay in the dark as much as possible once the sun goes down but if im using light I have blue blocker bulbs and a 100% blue light filter on my computer.

    @bluestream

    The only herb that has any effect for me is Theanine and even then it's very slight. Lately I have been combining Theanine, Prazosin, NyQuill and doxepin and STILL struggle to get a few good hours of sleep. Its crazy.

    @Iquitos

    I used medical marijuana for a little while with adrenal fatigue and it helped but after a horrible incident with ativan I can no longer smoke it. Anxiety gets way too high and it makes me paranoid. Plus since the ME I'm so badly dissociated that it only makes me more dissociated
     
    Little Bluestem likes this.
  15. Aileen

    Aileen Senior Member

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    I've had various sleep issues for years. One thing that made a difference was the tricyclic antidepressant Elavil (generic name Amitriptyline). It is used for pain and sleep at much lower doses than for depression. The lowest dose tablet is 10mg. I cut it in quarters and took 2.5mg two or three hours prior to my desired bedtime. It worked immediately.

    Unfortunately I was on it for migraines and so had to increase the dose for that reason. But I started having trouble with it and had to go off it. If you can keep it very low, just increase by 1/4 tablet every couple weeks, maybe it will help. You may experience some initial symptoms but they will pass as your body adjusts.

    Currently I am taking Lyrica to try to stop neurons from sending out so many distress signals. It did not effect my sleep at all at first (I started at 25mg). I have been increasing by 25mg per week. I am now up to 200mg and am noticing that I am sleepy. Not so great during the day, but at night only it might help.
     
  16. ahimsa

    ahimsa Senior Member

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    What treatments are you taking for the dysautonomia? And do you have a more specific diagnosis? (the type of dysautonomia)

    I only ask because my treatments for Orthostatic Intolerance (Neurally Mediated Hypotension in my case), especially the midodrine, helped improve my sleep. It was a pleasant surprise because I did not expect my sleep to improve. I was thinking it would just help with my OI symptoms during the day.

    This is an indirect effect because the midodrine is not taken to induce sleep. In fact, just the opposite. Midodrine must be stopped at least 4 hours before lying down just in case it makes your blood pressure rise too high during the night.

    I take midodrine during the day along with fludrocortisone (Florinef), extra salt and potassium, and 3 liters of water. This helps reduce OI symptoms while I'm upright. Apparently, without this treatment, when having more OI symptoms during the day, it messes up my body and makes my sleep worse at night. I know there's a more technical way to describe it (something about the sympathetic or parasympathetic nervous system?). This is just my quick and dirty description since I don't have the time/energy to look it up right now. :rolleyes:

    By the way, I don't take any sleep drugs or anti-depressants. I fall asleep very quickly. My problem is frequent awakening. On a good night (if I do everything right, don't push myself during the day, remember to take all my drugs at the right time, drink enough fluids, etc.) I wake up 3-4 times a night. On a bad night (reverse everything listed) then I might wake up 10-12 times per night. That means I sleep in 15 to 30 minute chunks.

    I go back to sleep very quickly each time. I'm not anxious (I'm used to it). And I don't lie there awake. But sleeping in such short segments is not good.

    This may not apply to you because your sleep problems seem a bit different from mine (e.g. I have no problem falling asleep, my only problem is *staying* asleep). But I thought I'd throw out the idea just in case treating the dysautonomia during the day might help (indirectly) with your sleep problems.
     
    Last edited: Apr 5, 2014
  17. Aerose91

    Aerose91 Senior Member

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    @ahisma

    What you say is interesting. I (to the best of my knowledge) didn't have any OI symptoms prior to a crash about 3 months ago which is when all this started- OI and sleep problems amongst other things. I don't know why type of OI I have. I have POTS but also I get very dizzy, light headed and fatigued if I stand up. I notice that the better I sleep the better the OI is, and vise versa.

    I have brought this up to my doctor and he doesn't say anything.other than just stay on the electrolytes that he gives me. I really think if I could get sleep under control some other symptoms may fall into place as well.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If u think nmda glutamate are an issue for u because of benzo use then maybe look into nmda antagonist like mementine or cough medicine dextromethorph . Both can reduce nmda.

    Also talk to your doc about seroquel for sleep. Start low and see how u find it. Can give u a hangover??
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  20. CFS_for_19_years

    CFS_for_19_years First Do No Harm

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    I haven't taken Paxil or Remeron for a while, but they both helped me with sleep. They are both antidepressants.

    Right now I'm taking a combination of low doses of Lyrica, Doxepin and Flexeril every night at bedtime to help me wind down and numb chronic pain. I would have better sleep if I could take larger doses, but I have very dry eyes and all of these drugs dry out my eyes. I think the two drugs I mentioned earlier also caused dry eyes, IIRC. It's not a concern for most people.

    I absolutely need to take 3 mg of sublingual melatonin every night. I feel a big difference between taking sublingual melatonin and non-sublingual. Brands I like are Source Naturals and NOW. (The NOW brand doesn't say sublingual - it says chewable, but I just keep it under my tongue.) If you've been taking the type of melatonin that you just swallow this could make a difference. My sleep doc said it was OK for me to take up to 10 mg, but I've never gone above 3 mg. It usually takes effect for me in 45 minutes. If it gives you a morning hangover then take less.

    Can your doctor refer you to a sleep specialist? I've found them to be very helpful.
     

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