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Poisoned by sleep, please help

Discussion in 'General Symptoms' started by alldayeveryday, Jan 18, 2018.

  1. alldayeveryday

    alldayeveryday

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    I've seen similar discussions around this topic but was wondering if anyone could relate to my particular symptomology and might have any suggestions on what I could try to get some relief.

    To start, my sleep doesn't really feel like anything. By that I mean that I wake up with very little perception that I had slept, no matter if that's 5 hours or 10, rarely dream, never feel rested from sleep and, what feels most important to me, never get sleep inertia or grogginess, something that always characterized my sleep before this all started(2.5 years ago, im 23 now) and had always felt to me like what was behind the rested feeling I got from sleeping. I don't have problems falling asleep around my general sleeping time but cannot nap during the day.

    The worst part of it all is I also have a paradoxical relationship with my sleep whereby the more uninterrupted, long, and sound feeling my sleep is, the worse I feel. If I sleep deprive myself, I'm somewhat manic, but my mind is clear, I have more energy and stimulants like coffee help a ton, this is the closest to normal I ever get, however, this is not sustainable past the 1-2 day mark.

    If I sleep 5-6 hours I feel worse then if I had entirely sleep deprived myself but my energy levels are better throughout the day and my mind is clearer, I can function somewhat with proper pacing and rest but if I keep this up I get worse throughout the week because of the sleep deprivation and I'm generally to wired to ever nap.

    If I sleep naturally, wake up after 7-9 hours, god help me, especially if I'm doing things that generally improve sleep like keep really good sleep hygiene or feel really relaxed and pleasantly tired. I'll wake up with this horrid unrefreshed feeling that will weigh on me throughout the entire day, it's not a physical exhaustion, but makes it hard for me to keep my eyes open and leaves me mostly bedbound. I get this constant sense that my body really wants me to try to sleep and that it's craving refreshment. I get the feeling that if I lay down I will be able to sleepy deeply, but this never happens. Sometimes this unrefreshed feeling even gets worse if I do close my eyes and try to nap and generally I'm to mentally exhausted to even easily have a conversation with someone. When I force myself to mentally exert myself in these circumstances I get mental PEM that adds to the brainfog and general malaise.

    Then, on most days that I don't overexert myself, this poisoned from sleep feeling will slowly abate till around 1-2 am where I feel a pleasant normal tiredness, I'm generally so relieved at this time because the weight of the exhaustion mostly disappears. At this point I can go to sleep but can also do some mental work/activity.

    I've even tried using stimulants like Ritalin before to see if it could put a dent in the unrefreshed exhaustion but most of the time it has no effect, even when combined with coffee. In fact stimulants seem to have almost no effect on my body(even in large amounts) in this state at all. On rare occasion they do actually cut through, and I feel better for some time but I haven't been able to see any pattern to that happening.

    I've also tried the following medications/supplements for sleep

    Trazodone - Made my sleep feel sounder, which on average made me feel worse
    Amitrtriypline - Same as Trazodone at higher doses but I've found that 20mg seems to make me feel better when sleeping 6 hours so I use it then.

    Tryphtophan, 5HTP, Valerian Root, GABA, Melatonin - Either no effect or I get more dreams/feel more like I've slept and generally feel worse.

    I've had a sleep study and been diagnosed with mild sleep disordered breathing(closest thing may be UARS) but had that treated with CPAP for over a year with no effect as well as some other thoroughly intensive workups to rule out other causes.

    I'm getting increasingly desperate for some relief, I'm forced to structure my life around sleep deprivation for basic living and cycling these bedbound unrefreshed nightmares. I'm also scared of doing this in the long run for fear of getting worse but I currently have no choice. At one point I even tried sleep restriction for a week(5 hours a day) and while I really wanted to sleep and eventually fell asleep in the afternoon, even then I had no sleep intertia/groggyness and no relief other then from getting rid of basic urge to sleep instincts.

    Does anyone have any ideas/can relate? I apologize for the wall of text, I've just been really struggling.
     
    Last edited: Jan 19, 2018
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  2. Learner1

    Learner1 Professional Patient

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    It is a wall of text... Trying to understand what you're looking for. Not sure if your goal is to be awake better when you're awake or sleep better when you're asleep?

    If you could clarify further, i might have a couple of ideas...
     
  3. alldayeveryday

    alldayeveryday

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    Ideally I'd like to be able to sleep the amount my body naturally craves and that I can get if I don't set an alarm(8-9 hours), without being worse all day as a result. Because everything feels/seems so linked to my sleep, I think that'd entail trying something that would help me sleep better(higher quality) when I'm asleep. Alternatively, if something could also lessen the symptoms I get from sleeping naturally, help me be awake better when I'm awake, that would be really helpful as well.
     
  4. Runner5

    Runner5 Senior Member

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    Are you on any other meds? Sounds like a med reaction....
     
  5. *GG*

    *GG* Moderator

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    Sorry to hear about all this. I have been and am back on Trazadone. Lots of info there. So you don't dream and don't want to dream? Thought dreaming is deeper sleep and what we need.

    Anyways, have you ever tried Remeron/mirtazapine? I have found that best for me, but have been on it for nearly 10 years, and some times it does not work, therefore back with some Trazadone, and recenlty started Amitryp as well. The amitryp really fogs my brain the next day though.

    GG

    PS I also sleep with cPap and oxygen. Doesn't seem to make a big differnece, but I have OSA.
     
  6. alldayeveryday

    alldayeveryday

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    Unfortunately this started before I was on any medication and I actually resisted any sort of medication for almost a year after it began so I don't think it's related to any med reaction.
     
  7. alldayeveryday

    alldayeveryday

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    I guess that's the thing that always gets me. I like dreaming, when I take medications or do lifestyle things that make me dream I feel like my sleep is better, but then when I open my eyes and try to go about the day, I feel much worse. The "better" my sleep quality appears to be the worse I feel, although I've yet to get any kind of sleep that has felt truly deep since this all began, I haven't been groggy in over 2 years. it's comical to me that I have to sabotage my sleep in order to not have crippling brain fog and mental exhaustion but that's what I'm experiencing. I'm starting to think there may be some immune/hpa axis thing going on where when I don't sleep well my body can't do whatever it wants to do to hurt me but I truly don't know what's going on.

    I've thought of trying Remeron and will try to bring it up to my doctor. Is there anything about the quality of sleep that you get on the drug that differs from trazodone/amitryptyline? I unfortunately have not found much success with the latter two.
     
  8. Diwi9

    Diwi9 Senior Member

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    @alldayeveryday - I feel your pain! I often wake at 7-8 a.m. after falling asleep at 2 a.m. I feel great for about an hour, energetic and clear-headed. After about an hour, I cannot stay awake and subsequently fall asleep with very lucid dreams. When I awake, I feel hung over. It takes me 1-2 hours to start functioning.

    Before I was diagnosed and in the mild state, I could function by having coffee and 1/2 a Sudafed, but would have to take naps in the afternoon. Stimulants, including my beloved coffee, just make me feel like crap now that I'm moderate.

    As humans, we are not naturally regulated to the modern sleep schedule, this is conditioned as a convenience to how society functions. As people with ME/CFS, our sleep cycles are dysregulated. This is just my opinion, but try to take time on your days off to find your natural sleep cycle and do you best to conform your life around your cycle. I have higher levels of functioning during my good hours when I do this, but unfortunately, it can be highly inconvenient. To me, it's just part of pacing.
     
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  9. *GG*

    *GG* Moderator

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    Yes, I would wake up feeling more refreshed, not great like when I was healthy, but better. Not like I had been run over by a Mack truck!

    You should be able to get it prescribed easily, my local PCP has been prescribing it to me for about 3 years now. My specialsit for CFIDS is over 3 hour drive one way.

    GG
     
  10. Hip

    Hip Senior Member

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    One of the cardinal symptoms of ME/CFS is unrefreshing sleep. It's listed in both the CDC Fukuda definition of ME/CFS and the Canadian Consensus Criteria.
     
  11. perchance dreamer

    perchance dreamer Senior Member

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    Do you remember if you had any central apena events in addition to the OSA? @TiredBill found out through SleepyHead software that he was having enough central apenas to warrant treatment through a pap machine specifically for this condition.

    Since apparently SleepyHead can tell you if you have centrals, it might be an easy thing to try if you don't want to have a sleep study right now. I think the software derives data from the card in your pap machine.
     
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  12. alldayeveryday

    alldayeveryday

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    Interesting, I think this will be on my list of medications to try next. Thanks a bunch for the suggestion.

    I've actually spent quite a bit of time in Sleepyhead hoping that it could reveal that my symptoms were related to SDB rather then ME/CFS but my numbers look really good, even with respect to centrals. Sometimes UARS is considered to be more nebulous then apnea and CPAP treatment doesn't work for those people because of what is suspected to be a hyperactive nervous system and I'm following up with an ENT to see if it's worth trying things there and seeing if I can get any improvement from those treatments but conventional sleep medicine would say that I'm treated with CPAP and that should not be the source of my sleep issues.
     
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  13. PatJ

    PatJ far and free I gaze

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    I used to have this problem. Methylfolate helped, then LDN helped even more. See my signature for details about the current methods and supplements I use for sleep.

    That used to happen to me, and sometimes still does. LDN and other sleep supplements have dramatically helped to reduce how often it happens.
     
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  14. Learner1

    Learner1 Professional Patient

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    Having my thyroid, adrenal, and sex hormones, as well as nutrient deficiencies measured and then addressing the issues found has done a great deal to improve my sleep.

    Things I've found helpful in various ways over time include magnesium, theanine, taurine, glycine, citrulline, 5-HTP, GABA, pyridoxal-5-phosphate, folate, B12, melatonin, LDN, progesterone, pregnenolone, DHEA, and hydrocortisone.

    One or more might be worth a try.
     
  15. alldayeveryday

    alldayeveryday

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    What kind of methylfolate protocol did you follow? I did a DNA test and saw that I was homozyogous for the MTHFR mutation and was really excited to try https://www.amazon.com/Thorne-Research-Methyl-Guard-Methylation-Supplement/dp/B00O5AHC4S/ref=sr_1_3_a_it?ie=UTF8&qid=1516556763&sr=8-3&keywords=thorne research mthf but I've just seen no effect, positive or negative, and that supplement has some pretty high doses. I however admit to usually being to tired and brain fogged to really get a sense of the science behind methaylation and the best way of approaching any treatment so I am fully aware that there may be a better way of treating that, I just don't know how to get there.

    I'll make an effort to try LDN and the other supplements/strategies that you've posted, thanks so much for compiling such an indepth document of something that took you lots of effort and experimentation to get at. I'm really glad you get at least some relief from the unrefreshing hell and i'm really hopeful that something on there will help me as well. I initially thought that LDN was something that helped a bit with sleep but was taken largely to help with other symptoms but it looks like it really does have a dramatic effect on sleep for a lot of people so i'm going to try to prioritize trying it.

    i've had a pretty thorough endocrinological workup but the tests I got were taken more from the perspective of do you have a clear cut diagnosis of something like Hashimotos or Addisons rather then optimizing my levels of various hormones. It's hard for me to look at those tests and get a feel for what supplements might be worth trying out. Did you use standard lab tests to gauge any hormonal/nutritional deficiencies or something else? What resources did you use to understand those results and then attempt treating them? Thanks a bunch for the reply.
     
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  16. Learner1

    Learner1 Professional Patient

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    I've found a Genova Diagnostics NutrEval to be most useful in customizing a program.

    Thorne MethylGuard is a good product, as are MethylGuard Plus, Neurochondria, and 5-MTHF. There are similar high quality products from Seeking Health and Designs for Health. 5-MTHF is the form that your body uses, you don't have to convert from the other forms, so it's easier for most people's bodies to use.

    If you start down the path of folate and B12 supplementation, be aware that you may also need more magnesium, molybdenum, B6, B2, B1, amino acids, and possibly TMG, potassium, and methionine. How much you need of each will depends on your genetic and environmental factors. A functional medicine doctor could be extremely helpful, but you can learn a lot these days on the internet (though the quality of info varies).

    As for dosage, you'll have to work out a plan customized to you, rather than following some recipe for someone else. It's best to start with a balanced approach and gradually increase/adjust doses.

    Some people can tolerate only the tiniest amounts, while others of us need massive amounts. For example, I recently learned that though I'm taking 250mg B2 (riboflavin) a day, I'm still severely deficient, even with 19,000% of the "daily value" for normal people, which is not a good idea as its essential to making ATP, our body's energy currency. (It's also one of the deficiencies noted in the metabolomics study, so not too surprising.)

    Best wishes...
     
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  17. PatJ

    PatJ far and free I gaze

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    After taking the first tablet of methylfolate (Solgar 800mcg) one morning I noticed that I was resting better in the evening. Within a few days my sense of humor started to return and the wired-but-tired feeling (that I didn't even realize I had been living with for years) started to fade away my sleep improved. This was in combination with methylB12.

    I started taking both as part of Freddd's treatment (it's not really a protocol). I ramped up the methylfolate until I was taking 25mg/day, then slowly dropped to 8mg/day because the higher doses didn't seem to have any extra benefit. Now that I'm no longer doing Freddd's treatment I take 1.6mg/day.
     
  18. Learner1

    Learner1 Professional Patient

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    Not to be too negative, but one caution with folate - more is not better. Too much or too little can promote cancer (and other problems).

    It is best to determine your optimum dose through RBC folate, FIGLU, MCV, and/or homocysteine, or better yet, a NutrEval, OAT, or HDRI methylation profile.
     
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  19. gregh286

    gregh286 Senior Member

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    noticed this years ago.
    more sleep = Worse CFS.
    Less sleep = Better CFS but more of natural tiredness.

    Look at howard bloom, sleeps in 4 hour blocks, guess he noticed it as well.
     
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  20. Hope78

    Hope78 Senior Member

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    Omg I have exactly the same thing going on!
    I did a post on this today in the sleep forum.
    After 7-9 hours of sleep I feel so drugged up the whole day, its a nightmare. I function better with 5 hours of sleep, but am too wired to nap then.
    What the *#&ยง* is going on here? Never ever had this before!
     

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