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What has helped more with your sleep?

Discussion in 'General ME/CFS Discussion' started by Beyond, Nov 1, 2013.

  1. seaflower

    seaflower

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    I, too, would like to know what to take if I can't take clonopin. I've been on it for decades and it was Hell before I was on it. I got insomnia from a horrible antidepressant that didn't even work. It was called Elavil. Whatever that did to me, I have never been able to sleep normally since getting off it.

    I have tried all the prescription sleeping drugs but they have bad side effects like making me shake. The side effects do NOT wear off even though the doctors say they will. A few months ago I made a long list of herbal and other types of sleep aids like melatonin, passion flower, hops, etc. and nothing worked. Valerian has never worked, theonine didn't work. The only thing that works is clonopin.

    I have cfs and chemical sensitivities. I got rid of the fibromyalgia by taking L-glycine and I think there is something to being low in amino acids because something is preventing sleep, as if something is missing. I've just bought a whole lot more supplements to try even though it gets really expensive. So--what are our alternatives if we don't take clonopin? It's the one drug that I can take and not get side effects. It's the one thing in the world that will make me sleep. How can we find out what is preventing sleep? Is it a missing amino acid and you need to get tested for amino acids? Is it something to do with cortisol? If so, what do you do about that? What do you do if you're already taking magnesium and all the other cfs supplements but you cannot sleep?
     
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  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @seaflower, have you tried taking several OTC things along with the clonopin? You might be able to take less clonopin, if you dr. agreed. I know you have to be very careful about reducing the dose of clonopin.

    I take xanax, but it does not totally solve my sleep problem. I take several OTCs, including theonine and low dose valerian. I also have a couple of new RXs, but haven't tried them yet.
     
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Seaflower once we travelled to Madrid and I got some nice extensive tests by an expensive functional doc. What we found is that I am defficient in melatonin and severely defficient in GABA, well among a lot of other things. Melatonin and GABA have never worked for me, BUT, melatonin subilingual might and pharmaGABA is shown to cross the BBB which synthetic gaba does not.

    And there are so many more factors to sleep, like adrenals, serotonin, thyroid, estrogen, androgens... in fact, most of defficiencies and pathogenic states affect sleep, including brain inflammation or oxidative stress. But if you are defficient in melatonin and GABA that should be a start.

    BTW, I also tested defficient for tryptophan and B6, needed substrates of melatonin...
     
    Last edited: Nov 8, 2013
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  4. seaflower

    seaflower

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    That's interesting because melatonin and gaba never worked for me either. I am working on the adrenals right now because I was recently put on Prednisone, a short dose, and it made me feel great and happy and energetic but tapering off made me start to cry and get weak and achy. I am taking sub lingual adrenal support--I think you are onto something with things working better when they are sub lingual. You were lucky to get those tests. There are amino acid tests available, I have read. Don't know if it's though a doctor or just another Do it Yourself job.
     
  5. seaflower

    seaflower

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    Yes, I have taken all the herbs and other natural remedies I have ever heard of. Nothing worked. One amino acid helped though and that was L-Glycine. It took my fibro away completely in three days and it gave me some deep sleep. It was proven in Japan to provide a deeper sleep, not a longer sleep though.

    I seem to fit the pattern of low adrenal function. I was just reading on here that if you're one of those people who sleeps best from around 5am to 9am it's adrenals. Well, I can't sleep at night but around 5am I will often go to sleep and wake up ata 9 or 10am. I have been that way for decades, making it impossible to hold a job. I would LOVE to just solve the sleep problem. I'm not too sure how NAC works but the last few nights it seems to have had a calming effect and it has let me sleep--with clonopin, of course.
     
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  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Well, my first night on the melatonin, pharmaGABA and glutathione reduced. I felt different, probably more relaxed, but fell asleep at 3:15 AM :cautious: Coincidentally I also started taking resveratrol which is known to trigger insomnia in some. I had intense dreams though, in one of them we were even speaking in english, that is very uncommon for me. I am gonna stop the resveratrol and pray that it was that. Heh heh I will give it to my friend who wanted to try ginseng. Maybe is good for him, everyone is different. I like experimenting.

    @seaflower Glyicine still works for you? I think NAC in fact helped me doze off. I will try again tonight (we have pharmaceutical effervescent NAC in the wardrobe I found out the other day, I wonder how expensive it is).

    You know, there is hope. I have researched this stuff like, a LOT, and adrenals, thyroid and methylation are huge for sleep, and especifically refreshing, non-fragmented sleep. When you have issues with these is normal that other things don´t help. My tests showed SEVERE adrenal dysfunction and some hypothyroidism, and I am talking about very comprehensive tests of hormones that I cannot even remember, things like hydro-teta-cortisol or something. My tests over the years have also showed hints of methylation problems, because B12 and folate were usually low and glutathione low of course too.
     
    Last edited: Nov 14, 2013
  7. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Today was pretty easy to get to sleep, it took half an hour. These supplements help. Howeveeeerr as always I wake up 5 hours later and this time for whatever reason I fail to fall asleep again and I am up one hour. Fall asleep then after taking 1200 mgs of NAC, and sleep just one hour more. Wake up from a dream in which I realised it was a dream and consciously pushed to wake up (is the first time ever that happens to me) and decided to get up. I feel pretty rested, but also a bit strange. I feel like I have taken to too much things and a bit drugged.

    I am so fucking fed up of having to battle for getting to sleep and staying sleep. Every time I wake I have to be patient as fuck and suffer in my bed and if I am lucky I get back to sleep, but hey, just for 5 hours or 1. My every night pattern is 5-1-1-1. Fucking hell. I am angry. Lots of nights my parents hear me screaming like the caged prisoner I am because of this disease. At least I have my anger, you can do something with that, depression only drags you to the floor. :mad:
     
    Last edited: Nov 15, 2013
  8. seaflower

    seaflower

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    You sound a lot like me. I only had to take the L-Glycine for three nights to get rid of fibromyalgia--it was a miracle.
    I think I only take 600 mgs NAC so maybe I should up it. Yes, with the NAC and klonopin I do fall asleep but about 5am I am UP. I never thought of taking more NAC when I wake up but maybe that's worth a try too.

    I've also been just taking a handful of aspirin when I wake up and can't go back to sleep -- not on an empty stomach though, I have a piece of bread to protect my stomach from the aspirin. It can help me fall back to sleep. Boy, if I do fall back to sleep at 5am I sleep very soundly until 10 or 11. Of course, by then half the day is gone.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There just doesn't seem to be a perfect answer for sleep. So many varying issues and effect treatments vary from person to person. Wish they would invent a few more new sleep meds.
     
  10. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Yeah but what about the long term effects? I fear that many meds like those affecting GABA could eventually make your natural homeostasis/production get even worse than when you started taking it.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    [qote="Beyond, post: 404271, member: 6360"]Yeah but what about the long term effects? I fear that many meds like those affecting GABA could eventually make your natural homeostasis/production get even worse than when you started taking it.[/quote]
    I dont think my sleep could get worse than it was before sleep meds. If I stopped my ability to function would drop badly.
    I think if someone can get 5 to 6 hours sleep then it might be worth avoiding sleep meds as theres a chance it may return but getting only a few hours of light broken sleep will bring anyone to their knees even without cfs. Unless cause of cfs can be directly treated then I think the sleep dysfunction will also continue.
     
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  12. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I know heaps, I´m in other league. I am 22 and I get at the very least 5 continous hours of sleep per night. I understand what you say and agree that even the healthiest chap would get on his knees with just some days on real bad sleep. People like to brag and talk shit like "Oh I went years with 5 hours and it was fine" Is clear these people don´t know what light/unrefreshing sleep is like, otherwise they wouldn´t go on with their lifes and be so active because you just can´t. Especially when you have a nice array of other symptoms on top of those caused by sleep deprivation.

    I just think these meds are not very healthy and I want to get to the bottom of my sleep problems.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    definately and its accumulative too. I do think some people also dont realise how long they have slept for as well, numerous times my wife has said to me she didnt sleep very much and i have actually been lying beside her all night hearing her lightly snore or i have been up and down several times trying to sleep without her moving at all and i have been wide awake the whole time. its a tricky subject as there can be so many things going on even mild pain could be an issue and treating this can improve things.

    I dont want to push anything onto anyone as its a personal choice but benzos are indicated for short term use of insomnia but they use to say long term use in people with chronic medical conditions that cause sleep problems. This doesnt get mentioned much and is probably different depending on the country where one lives. I also think it would be good if alternative/natural treatments were recommended by most doctors and maybe have a sliding scale of options for sleep taking into account severity as well as if one has a chronic problem.

    I also think there are smarter ways to use anything for sleep, be it medication or supplement as tolerance is bound to happen. Many times one item is used and when it stops working the dose is just lifted, this i think is dangerous and can cause big issues with tolerance and withdrawal issues when its stopped.

    So there needs to be more options and alternatives and smarter ways to use them.
     
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  14. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Ahhh the classic moment when you are wide awake hearing someone else enjoying a good night´s sleep... and boy they get to sleep soon too! How can someone hit the pillow and in 5 minutes be asleep is something I cannot conceive. I experienced that even when I was an apparently healthy teen and we went camping with people of my age. Something was off even then.
     
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  15. WoolPippi

    WoolPippi Senior Member

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    I hear you! I have the EXACT same sleep pattern. 5 hours DINGDING wakey wakey. All. My. Life. There are not much of us! And yeah, rolleyes at people bragging about their 5 hours. Not the same, dude, not the same.

    my conclusion is that this is caused by a cortisol peak. Cortisol accounts for waking you after those 5 hours and keeping you awake. It's a special kind of alertness when you wake after 5 hours, right? Mental clearity, if not a racing mind! It was the one time I could read science when I was really sick. Cortisol half time is 1 to 2 hours and then you might get another hour to snooze.

    The good thing is that those first 5 hours are the most important in sleep, it is the Deep Sleep.
    If you manage to snooze around 6 then you get a bit of REM sleep. Also very important.
    But that's all the good news there is.... it just means we won't die sleeping like this. Yay.... It doesn't mean we're healthy. Quite the opposite! We are robbed of the healing powers of sleep. We are just hanging on, not dying.

    I have not yet determined what causes this nightly cortisol peak. Must be something system wide.
    some factors I've found thus far that exagarate the level of nightly cortisol are: cortisol surges during the day (stress); dustmite allergy; lack of progesterone (the sleeeeeeping hormone); insulin peak during the day (diet. potatoes at dinner --> extra alert at night). And for me personally: not feeling safe in my bed, my house, my life.
    Addressing all of these issues now sometimes gets me a full nights sleep. Once or twice a month. After 40 years. So worth it.
    Still no clear pattern or guarantee and I still haven't got a clue beyond this. And I am really studying this hard!

    I CAN tell you that I think this nightly cortisol peak is using the cortisol you normally need to get up in the morning. Getting out of bed is a drag without it. With me, my adrenals were able to cover this for about 35 years. Then flop! adrenal exhaustion. So please take care. After 25 years of age all your endocrine glands are past their peak. At 35 years of age they are seriously declining (hence lesser fertility in females and thyroid problems) and you need to be a sensitive conductor to keep them all in harmony.

    Your anger might be robbing you of your adrenal fire right now :( but hey, anger = adrenalin = gets you going)
    And frustration needs a way out too! I personally like to buy old crockery and smash it too bits, screaming. Then have to be in bed for a week :s

    oh, I can tell you what doesn't work, but you already know ;) (sleep hygiene, melathonine, whale sounds, no screens to look at, segmented sleep theory, medicines, age, taking cortisol at night)
    A dark room and no need to pee at night is helpful. As is a fat based diet so you won't go hungry. And valerian before bed. But these are details, not the cause. Once that cortisol hits you have to ride it out...

    I will alert you if I find any new things that might help us sleep.
    Would love to get suggestions what you think might cause it. Something is freaking out the system.

    What happens to it in those 5 hours? Do the glucose reserves in the liver get depleted? Have all the toxins build up during sleep healing and not find a way out (due to genetic mutations)? Has our food digested by that time and is energy not properly stored away, causing blood sugar to spike? Has all the progesterone gone, crippling basis processes?
    Something is freaking out our bodies after those 5 hours of first sleep... but what?
     
    Last edited: Nov 15, 2013
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    WoolPipi maybe its all those things u mention is causing sleep issues or some alternating combo??

    I have dabbled with many things, combos etc, cortisol rythms bla bla bla. sometimes these things help and sometimes it doesnt, just cant seem to hit the nail on the head. Its like that dam nail keeps moving, occassionally we smack the dam nail in but the next night we hit our thumb.
     
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  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    @WoolPipi Is great to have you with me with so much experience and determination (but I am sad you had to endure this for so long). Do you use progesterone? I am defficient according to tests of boths allopaths and alternative physicians. If I use that will I get more feminine or something? lol Basically all my good hormones are low. DHEA is the precursor of progesterone, I also have it like a granny. I wonder if taking DHEA could help sleep? Hmm I don´t want it converted to estrogen which I already have high.

    Oh yeah it takes me hours sometimes getting up. I feel SO awful. It vanishes after hour, hour and a half, depends of the degree of shityness of the sleep I got. Then I get up and feel bad but not quite like wanting to die.

    I always suspect is adrenal fatigue, thyroid probs or sympathetic dominance (which is tied to adrenal fatigue). When I was a teen with slight insomnia I never woke up at 5 AM. It started for me with the illness so I think is adrenal fatigue or something hormonal.

    Oh @heapsreal I google for sleep, progesterone and men and I get you in this forum. Spinning the wheel... :(
     
    Last edited: Nov 15, 2013
  18. madietodd

    madietodd Senior Member

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    There was a newspaper article link going around facebook a few months ago, about people before electricity getting 'split sleep.' It was common enough that it was referred to in literature of the time as a normal option. They would sleep 4-ish hours, naturally wake up, get up or read in bed or whatever, and then go back to sleep sometime later.

    All the sleep studies we see are about patterns within the presumed normal sleep. But maybe there are a lot of sleep patterns that work for humans... they just don't fit into our work-week structure.

    I'm not minimizing the wreckage of insomnia. I've lived with it for decades. But I'm managing it better now that my goal is to feel more rested every 24 hours, rather than to get 8-9 hours of steady sleep.
     
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  19. WoolPippi

    WoolPippi Senior Member

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    @heapsreal, yeah, that stupid nail.. it's slippery and invisible too. Makes no sense and drives me nuts.

    @Beyond, no Progesterone won't make you feminine. It's the first hormone after DHEA and your adrenals are making it. Or are supposed to make it. They use it for all the other adrenal hormones: cortisol, aldosterone, testosterone and yes estrogens (but your body won't favour those I'd guess. Mine doesn't anyway and I'm a gurrl).
    Keep away from soy products and plastics though, these are sources of estrogens.

    I supplement 5 mg of hydrocortisone in the morning, wait 45 minutes for it to get converted to cortisol by my liver, then I get out of bed. My eyes've grown square from reading on my iPad while waiting for it to kick in...

    @madietodd, yes, that's called segmented sleep. It was very common in old times (Paleo till Victorian time, I guess). There are references to "first sleep" and "second sleep" indeed. And you are right that there are many different sleep patterns in the world and we should not worry about not fitting the commonly conceived pattern.

    However, Beyond and I are not rested after our sleep. Nor can we alter the pattern by any means.

    You are very wise for looking at the 24h total instead of 8-9 hours through the night. That seems to be the way to lessen the worry and the stress about this considerable. Which in itself promotes rest. Compliments.
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yeah i need to cut down on posting, when i google something i just find my own stuff ive psoted lol.
    Sorry to ask beyond but you are male??
    U need a certain amount of dhea and it supposedly can help sleep, if anything it can help counteract negative effects of cortisol??
    yeah i used some progesterone cream and it initially knocked me out but over time it stopped working. i think in general guys are best to top up dhea, pregnenolone, testosterone and reduce estrogen with arimidex??
     
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