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Your thoughts on my sleep disorder

Discussion in 'Sleep' started by Barry, Jan 22, 2014.

  1. Barry

    Barry

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    I don't have CFS but i have something that makes normal living impossible, My 'body clock' which is not my circadian rhythm is stuck at 7am-6pm and wants to move forward unpredictably, melatonin has no effect on this clock but will grudgingly move my circadian rhythm but that has not effect on my sleep time nor can i change the 'body clock' with any known means (blue light/full spectrum light, blue light blocking glasses, melatonin)

    Basically my night of sleep consists of two parts i call fundamental sleep (first 7-8 hours) and supplemental sleep (2-3 hours), If i am supplemental sleep deficient i am unable to concentrate, i have a fair amount of automatic behavior (like narcoleptics), i am 'burned out' and relatively tired and caffeine has no discernible effect on me whatsoever. If i am fundamental sleep deprived i am very exhausted and tired, more automatic behavior, and its a different kind of tired (hard to describe but i'm sure many of you here know what its like). Caffeine only has an effect in a very specific level of fundamental sleep loss that i have not fully deciphered, more or less then this the caffeine no longer has any effect.
    Caffeine will prevent me falling asleep at "night" if i take it within a few hours of sleep if i have gotten supplemental sleep, but with fundamental sleep loss its actions are rather unpredictable. However it has no alertness effect outside the narrow window of fundamental sleep deficiency.


    Also no amount of sleep deprivation will move my body clock earlier I cannot find any explanation or theory for this, i think the adenosine threory for this in mainstream medicine is wrong, or its only part of the puzzle.


    Even when fully functional (for me) i wake up dazed and feel like someone has been kicking me in the head, my short term memory is extremely poor, my physical stamina is short, my ability to due complex math is almost non existent (i can't learn complex stuff, calculus destroyed me). I wake up by noise easily, and if woken up during supplemental sleep i am likely to be unable to fall asleep again screwing up that day and possibly the next few till i recover.

    I am probably missing a lot of symptoms, i have had this all my life and though it slowly gets worse as i get older i am used to it and have adapted to what i go through, or don't know any different, having lived with people who are normal i am surprised by how their sleep reacts to stressors compared to me.

    Naps are not fun, short (under 1 hour) naps can't be done and if forced zap my mental functioning and are a complete clusterf**k. I need to sleep 2-4 hours to have any beneficial effect (screwing up my ability to sleep later) and i'll often wake up with a strong headache, though sometimes with no headache at all but the headache or no has little effect on my condition, its just more or less unpleasant. I try to avoid naps.

    I have tried more treatments then i can keep track of, to no effect or very paradoxical effect, i am wary of medications because they can cause life threatening reactions, for example effexor caused some type of stomach problem where i was throwing up all day everyday whether i had food in me or not (prior to this i had no stomach issues of any kind), and was on gravol injections for several weeks till it settled down, and to this day having not taken it in over a decade i have to take HCL with food and domperidone (which took years to figure out) because i feel sick to my stomach and like i have a 20lb lead weight in my stomach (they can't figure out whats wrong with me there either, and not form a lack of trying). I have gotten used to the nausea. Interestingly 5HTP will make me throw up, dose dependently, low doses i can keep myself from throwing up, higher doses not so much.
    Neither 5HTP or tryptophan have any effect on my sleep problem.

    I have had sleep studies that rule out apnea and other standard disorders, they did notice my delta sleep was less then usual but still there.

    I appreciate any ideas you have or even things reading this brings to mind. I have tried many treatments, and i can tell you what effect it had if someone mentions something.
    merylg likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Barry.. Im very confused by your post.
    Are you saying you sleep during that time or are awake at that time? When one has a circardian rythym which moves forward.. it usually mean the person has a non-24hr-sleep/wake cycle. If followed it will take the person around the clock with their sleep times
    Beyond likes this.
  3. Barry

    Barry

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    Sorry i did not explain it well, i have a circadian rhythm like everyone else but i can't sleep when it says sleep so i have to ignore it. I have a separate clock that i can't identify that determines when i can fall asleep (when my 'bedtime' is). I can move it forward slowly but i have never been able to get it so i can sleep at socially acceptable times and wake up to work a day job (not that i have the stamina to do so anyways). Its so intransigent that i try to keep it where it is to make my life a bit easier.
  4. ukxmrv

    ukxmrv Senior Member

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    Barry, If you could sleep at any time of the day or night when would that be? i.e. if here were no limits or socially acceptable norms?

    Just as an example, my best time to sleep is from 2am to 10am approx. It leaves me with the most physical functioning but doesn't fit in with a normal life.
  5. Barry

    Barry

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    7am-6pm, its what i do now and have to do, anything else is jetlag extraordinaire and won't last long doing it until i crash
    the sleep time is a kick in the pants, but the inability to mentally and physically function is a much bigger problem
  6. SickOfSickness

    SickOfSickness Senior Member

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    I would look into diet and sensitivities and allergies.

    Have you tried any prescription stimulants?

    You don't have PEM (PENE)? (Not counting exhaustion etc from not sleeping.)
  7. Barry

    Barry

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    Ive tried the no gluten, no allergens, no sugar diet to no effect (its crazy when what you can eat fits on one page), no to the prescription stimulants, they have been offered but without knowing the cause i don't want to make things worse, and most have nasty long term effects, i've eliminated most of the classical neurotransmitters as causes, through research and supplementation, serotonin, dopamine, gaba etc.
    What is PEM?
  8. ukxmrv

    ukxmrv Senior Member

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    When did this all start for you Barry?
  9. Barry

    Barry

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    I've had this all my life, apparently i did not want to sleep at night as a baby (so i am told)
    Elementary school was torture but it just kept getting worse till i could not function at all
  10. Beyond

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

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    So if I am understanding correctly, you get to sleep at 6-7 PM and wake up at 3 or 5 AM? It is certainty uncommon and obviously awful. Do you feel like the sleep is unrefreshing right? I´ve found that the refreshing factor of sleep depends highly of the hours of sleeping and the time of sleep. The range of 11 PM to 7-8 AM is optimal. Anything outside of that will make anyone feel like shit in a short amount of days, and also sleeping more than 8 hours. I normally sleep 10 hours and moderately outside of the optimal range, so I feel shitty but not horrible as I had in the past before melatonin sublingual.

    I am healing my leaky gut for my sleep problems and everything else it causes, which probably you don´t have, and gonna try a bunch of things soon: aswagandha, gotu kola, schizandra and resistant starch. Have you tried any of these? My philosophy is never stop trying stuff, even while most doesn´t work at all.

    Melatonin sublingual is the only melatonin that always works. Others simply don´t work in my experience, the typical supplement that in reality has little or no effect.
    Last edited: Jan 22, 2014
  11. SickOfSickness

    SickOfSickness Senior Member

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    So you never had normal sleep times for days or weeks in a row?

    I am not a fan of prescriptions but, in your situation, I'd consider stimulants to help change my sleep-wake times, just 2 or 3 small doses for a few weeks.

    I wish doctors would help you. Did you have lots of blood tests and they were normal? I think sleep cycle problems are related to gut bacteria and infections, so I agree with trying resistant starch. And get tested for more infections and try parasite cleanses.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    You would be great for the night shift.
    Theres also your cortisol cycle that could be out of whack also. When my sleep goes whacky I use Phosphatidylserine at night to lower high night time cortisol as well as melatonin and hydrocortisone in the morning or pregnenolone to increase morning cortisol or something like modalert in the morning to help get through the sleepy day time.

    I guess its sort of like going into manual mode to control ones sleep cycle and hopefully it resets it self. My experience is that my sleep cycle will eventually go off again so I rinse and repeat.
    merylg and August59 like this.
  13. Barry

    Barry

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    I fall asleep around 7am and wake up around 6pm, if i try to change it then i suffer greatly, i've done some short term jobs that are normal hours and basically i am physically and mentally exhausted and have trouble functioning and my unknown body clock never changes to match the hours i am forcing myself to sleep and function, and it gets worse each day until i crash in a few weeks and sleep for 14 hours a day for a few weeks till i recover to my peak

    I try to only do short term day jobs (a few days to a week at most) so i can sleep extra in advance and have time to recover afterwards (a few days to a week usually).
    Your description of feeling like shit happens when i sleep outside my unknown clock, and if i sleep only 8 hours each night i will crash within a couple weeks.

    Melatonin is the only sleep aid i am currently taking, it will affect my circadian rhythm (much more subtly then normal people which won't affect my sleep time) but the reason i take it is because it allows me to fall asleep otherwise usually even at 7am i will by laying awake for hours and then things start going more downhill. My daily functioning is a careful dance of sleep hours, sleep times and managing exertion levels, and it easily gets thrown off kilter.

    Most things i try have no effect, if i didn't know better i would swear i have taken hundreds of placebos, but i am careful not to try anything that can make my condition worse, i am wary of medications, prescription and natural, i would prefer to find a cause rather then throw things at it and end up worse off then i am now. I will try things that i research and have a low likelihood of causing harm.

    I can force normal sleep times for a while, but that means i am sleeping poorly, deteriorating each day and i will crash eventually. I have spent years living in a daze because i was forcing functioning at socially acceptable times, pushing beyond my mental and physical functioning limits, crashing on weekends, having random crashes during weekdays, sometimes for weeks, missing work and school, and forcing myself through it. I swear it amounts to torture, and sometimes...
    Stimulants won't affect the body clock, they just provide 'alertness' during your awake time.
    The cleanses don't make any difference unfortunately, what is resistant starch?

    In my experience doctors are used to what they see all the time, when you present with unique symptoms i get the "there is nothing i can do for you" speech after a few tests or even right away, though i've noticed with sleep doctors that they like to latch on to one symptom or observation and run with it, for example you sleep very late, you must have delayed sleep phase syndrome, these treatments will cure it (and have no effect), or another, you have increased heart rate, you must have sleep apnea (even though 3 sleep studies have disproven it and the test that showed it was probably an anomaly and is going to be retested) and they ignore all the other symptoms and pretend they either don't exist or will go away when the condition i don't have is treated. When i mention i tried the treatments they suggest and the results were this they ignore me, or seem to think i am being obstructionist. I sometimes do it again just to keep them onboard but when it fails i get the can't do anything for you.

    If you can recommend specific tests i can try and get then done, my GP is relatively cooperative and i can get many tests done on request as long as i explain why.



    I am better at night shift but not great, because my stamina is low, i can work a couple hours a 'day', if i force 8 hour shifts after a week i need 4 or 5 recovery days. After a few months i am practically delirious, and it can take months to recover and i have to find the right balance to get recovery and its very tricky

    I tried phosphatidyl serine twice, it had almost no effect, it does something barely if i am very far gone otherwise its almost another placebo. Rather similar effect to Magnesium (Natural Calm). Interestingly Acetyl Carnitine will cause me to wake me up after fundamental sleep, but with no sleep quality improvement, i start deteriorating right away.

    That reminds me of Glycine, at 3000mg it increases delta sleep in normal people (there are several studies backing this up that i have read), i find it does help me partially, i can recover faster if taking it when i am very far gone, and it helps partially counteract the extra mental deficincies caused by loss of supplemental sleep when i have to wake up 'early', but it will only get me to my peak and not to normal people functioning.
    Has anyone here tried it. I found to work best you have to take it an hour before falling asleep (this is rather firm requirement in my experience), and my cousin who tried it found alcohol will eliminate its therapeutic effect (its likely benzos will as well since they are cross tolerant)
    I only take it when i really need it to avoid any tolerance that may happen and when i am not working i can sleep at my normal times and not over exert so when i am functioning at my peak it causes no more improvement (i'm guessing because its not actually addressing what i have)

    I've had some cortisol tests done, and i forget he exact results but they provided no insight on anything, can you tell me more about how hydrocortisone or pregnenolone would affect sleep or wake?
    Last edited: Jan 26, 2014
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Barry hydrocortisone or pregnenolone are aimed at increasing morning cortisol which is suppose to be high in the morning and low at night.

    Phosphatidylserine did u try doses of 600mg as its these higher doses that have shown to have an effect.

    I think those of us with chronic sleep issues are always chasing our tails.
    August59 and merylg like this.
  15. Barry

    Barry

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    I'm not sure if i got up to 600mg, i remember that over 300mg didn't seem to have any additional effect but that was many years ago
    I hate tail chasing, it is very inefficient

    For some reason i seem to keep coming across DHEA for cortisol issues, but i don't know a lot about it, if anyone can provide some insight
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dhea is suppose to be in a balance with cortisol. Dhea is also said to have anti inflammatory effects against certain cytokines that cause sleep issues. But this is just a part of the picture that needs to be looked into.
  17. Barry

    Barry

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    Can you tell me more or point me in the direction of some details
    I have a bottle of it but i don't know when i should be taking it or how much, and how it would affect things.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    [qote="Barry, post: 422993, member: 13222"]Can you tell me more or point me in the direction of some details
    I have a bottle of it but i don't know when i should be taking it or how much, and how it would affect things.[/quote]
    I would look at get your dhea and other hormones tested first.
    The normal dose for guys is 25 to 50mg a day. I take 25mg twice a day. Blood tests showed I was below range at 2.1 normal was 2.2 to 15. Optimal is in the upper third of the normal range.
    I started with a low dose 5mg and slowly increased from there.
  19. Barry

    Barry

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    Is there a name for the test i should ask for?
    What time of day should i be taking it? Will it have a noticeable effect quickly or does it take a few weeks?
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thetes a 4 times a day saliva test which measure the cortisol cycle and measures dhea which is taken in the morning.

    If u can get your doc to send u for a morning blood test. Testing fasting cortisol. Dhea. Total testosterone. Free testosterone. E2-estradiol.
    Treat the defiencies and retest in 4 to 6 weeks.
    E2 is tested as sometimes dhea as well as testosterone can convert to e2 and dosages need to be adjusted or an anti estrogen med is used.
    All these things may indirectly help sleep and hopefully improve health.

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