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Can only sleep at 7 am

Discussion in 'Sleep' started by sharks, Jun 11, 2017.

  1. sharks

    sharks Senior Member

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    Another night of 3.5 hours of sleep. Except I can only naturally fall asleep at 7 am. If I take melatonin do every meditation possible nothing works.... until 7 am and then I get the natural urge to sleep and I sleep deeply and great! Until.. 11am and my heart rate shoots up and I can't get back to sleep. Does anyone know what I can do to shift this to a normal sleeping time?
     
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    I share this understanding that not everything that works for me works for someone else.

    Because I don't need to follow a time schedule I don't fight it. I wait until I'm ready to fall asleep then go to bed. I also then wake up in the morning too soon.
    I have learned to get up, have a few sips of water, pee, (and in my case put eyedrops in) and then I relocate to another room and lay down -- this because I find that my body heat has made where I was sleeping uncomfortably hot. I even use ice packs to help bring my temperature down. I find I can get another 3 hours that way.
     
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  3. PNR2008

    PNR2008 Senior Member

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    I know exactly what you are experiencing and it is very annoying to say the least. I have tried many things but for me it seems to come and go mysteriously. Meds help but only for a while. After all these years I still have night sweats where I change my bed clothes up to 3x a night. I end up sleeping when tired and adhering to a strange schedule but it's the best I can do.
     
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  4. Marigold7

    Marigold7 Senior Member

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    Why worry? Unless you have to work etc. I have been waking around 3 am for decades. So I am usually asleep by this time but tonight not. Only a pest if you worry about it?
     
  5. A zombie

    A zombie

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    you need to get a saliva cortisol test.
     
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  6. Alvin2

    Alvin2 Senior Member

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    You may have a severe form of delayed sleep phase syndrome. Also melatonin is time dependent, taken at the wrong phase of the body clock and its less effective then a placebo, it can cause the opposite :bang-head:

    All that said ME/CFS seems to screw with circadian rhythms so it may be the cause of your sleep issues, but also may not.

    Ideally you should go to a sleep doctor and get a sleep study done to eliminate the classic sleep disorders, sleep apnea, restless legs, REM behaviour disorder etc. These can cause late sleep time oddly enough. Do this if its not a huge financial burden and if you can manage it with your level of ME/CFS
    If nothing is found or you are unable to do so then you can try the treatments for delayed sleep phase syndrome, which are blue light blocking glasses, melatonin and bright light therapy.
    This is how it works, blue light (about the blue sky colour) tells our body its daytime, Since the invention of artificial light some people have been found to be sensitive to the blue component of artificial light (remember white light is made up of red, green and blue, and there is blue in 2700K standard light bulbs as well, and now computer screens/cell phones/tablets). This causes the body to think night time is daytime hence DSPS patients don't fall asleep at their chosen bedtime. So the blue light blocking glasses block out the blue component of light making everything look orange (make sure you get glasses that block 95%+, the 50% ones are not good enough, and they need to block light from the sides, top and bottom. You wear these glasses 3ish hours before your current bedtime and as your body gets the signal saying its daytime filtered out you will start getting to sleep earlier. Move to 4 hours if 3 is not working. You want darkness while your sleeping and you don't take these glasses off once you put them on for the evening at all, even a minute or two can undo their progress. I turn off the lights before taking them off at bed time. If this does a noticeable job within a month or two your flying. After your new sleep time is stable move backward 30 mins a week until your falling asleep when you want to. If the glasses on their own have not made a huge difference you may need bright light once you wake up naturally, hopefully about 8 hours after you fell asleep, which tells your body clock its morning. A sunny day with blue sky will work, or a full spectrum light box is usually required because not every day is a sunny blue sky day. If both are not enough then you can add melatonin but the timing is very critical and its hard to advice in a post without seeing the progress or lack of.
    This works for many people with DSPS, but some people are very treatment resistant, but some also don't get the timings of these treatments right so it would have worked but wrong timing made it fail.
    All that said these items cost money and if you can't afford them there are some cheaper options that are not as elegant but can work.
    These are the glasses i have, also consumer reports did some testing and there are alternatives for under $20 but make sure they are blocking over 95% of the blue light, 99%+ is ideal and make sure you see no normal light out the sides or top.
    https://lowbluelights.com/product/stylistics-i-stylish-black-framed-fitover-for-average-head-sizes/

    This is very generalized (not personalized which it sometimes needs to be) and if you try the glasses let me know if they worked or not worked and i can advise, sometimes its matter of tinkering the treatment or it may not be the cause, and its a bit of work to figure out which it is.
     
    Last edited: Jun 11, 2017
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  7. caledonia

    caledonia

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    #1 try getting off all screens in the evening. That means computers, tablets, phones, etc. TV may or may not be ok.
    At least don't have a tv in your bedroom. If the tv is on while you're sleeping, it will disturb your sleep.

    I have to be off the computer by 8pm or my sleep moves forward. Amber blue blocker glasses and amber screen apps like f.lux don't help me. I need to get totally off the computer.

    You may be more or less sensitive than me. I seem to be ok with watching tv in the evening, but I imagine either the tv or my 8pm computer deadline is still pushing my sleep forward some as I go to bed about midnight.

    The reason is that screens emit blue light, which tells your body to wake up. Your body is expecting blue light in the morning and amber light in the evening to have normal sleep/wake cycle. This light triggers the release of the neurotransmitters serotonin and melatonin.

    I actually had a non 24 sleep cycle that moved forward an hour per day until I discovered this bit of knowledge.

    When you wake up at 11am that is probably your natural rise in cortisol waking you up.

    There seems to be a delay in how the light affects sleep which makes it a little tricky. It may take a few days to start to see results.
     
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  8. Tally

    Tally Senior Member

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    It's just a regular ME/CFS symptom. Since I've gotten severe and can't get out of bed I don't fight it any more. None of the supplements and sleep hygiene tricks helped, and I feel like drugging myself with sleeping pills does more harm than good.

    The best thing I did for myself was stop being upset by it and letting it make me anxious.
     
  9. Marigold7

    Marigold7 Senior Member

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    Perfect and that applies to so much of what we suffer.
     
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  10. ukxmrv

    ukxmrv Senior Member

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    My "good sleep" time is from approx 6am until approx 11am. Can take melatonin and other things that makes me fall asleep earlier but the quality sleep seems to occur between these hours.

    Not sure if you are the same but if I do get up before 10.30am I have nausea, vomiting, fainting etc and my cortisol (from blood and saliva) tests is at it's lowest then.
     
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  11. Alvin2

    Alvin2 Senior Member

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    DSPS has several treatments, their effectiveness varies from patient to patient but i described it quite thoroughly in post #6
     
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  12. Shoshana

    Shoshana Northern USA

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    @sharks

    I am sorry to hear you are dealing with this, (and any others of you that cant sleep more than 3.5 hours)
    because I do know and understand,
    that you stated it as a problem for you,
    and you asked for ideas on how to possibly lengthen the hours of sleep, or shift them somewhat,
    to improve your level of sickness and your life,
    so I understand what you said and what you asked for. Is real and valid.
    For you, as it would be for most people.
    And often is for me.

    Yes, circadian rhythm problems go with this illness, I have that too,
    and in some cases, can be accepted as is, or must be, and might work out ok.

    For others of us, they are more extreme, and in some cases,
    it can cause additional sufferings, so we might ask for ideas about how to change it, that might have helped others who found it added more difficulty to their lives.

    That was what your post topic sounded like to me, but I might be mistaken.

    When I myself sleep for less than 4 -5 hours per 24, I suffer more, for all of my awake hours ,
    and even worse suffering if i sleep only 3 or 3.5, so i do seek ideas then, and try them all, to hope to get more sleep, and at whatever time of day is helpful for my eating and other ADL. (very basic activities of daily living such as bathing and eating.

    @sharks ,
    my guess is that is probably you why you asked for ideas , to help shift it or change or increase sleep, because it likely makes your entire sickness level worse,
    and in addition, limits what life activitivites you can manage to do, that might give you a bit of joy in your days.

    Ignoring or accepting it might work for some people, (and I am glad for them!)
    but for some of us, 3-4 or even 5 hours, simply is not enough sleep.

    For me, I know and believe that it results in making, for myself, my illness and my life VERY much harder ,

    ALL my other illness symptoms are exacerbated, for the entire days,

    and overall illness and function level lower and worse, and more miserable,
    I don't move or manage other basic human functions, as well,
    when I go through periods of time of getting 4 or less hours of sleep.

    So, of course, I don't get to do anything but feel ill all day, nor my thoughts cant be as naturally positive, since my brain did not get the sleep it needs.

    I am also happier fi I can be awake more during the day, and asleep more of the night. That is me.

    Usually I need MORE sleep than normal healthy people, in order to function at all, minimally,
    but I go through miserable periods of sleeping very little, that feel terrible to live through.


    And, as you stated your difficulty , is with sleeping only 3.5 hours per 24.
    That makes sense to me, and it I what you said, so it probably is a problem for you, as it would be for many people, in my opinion. That isn't enough sleep for a body to repair itself, even if it were not ill.

    That is a problem in my opinion, because I know that when I have weeks of it, my entire illness gets worse, understandably, because this is not enough sleep for humans to function with and maintain any bit of health they might have left.

    If someone else is able to take a bit of a walk outdoors and occasionally enjoy something, after getting only 3.5 hours of sleep per night, I honestly am very happy for them.

    But that might not describe most people.
    And I think it is important to accept and support the poster with whatever they tell us, on a support forum,
    is their difficulty they are asking for ideas for.
    I know that everyone thinks their ideas are helpful for the poster, and means well,
    and I hope all of the ideas ARE.

    Most or many of us, or just me and you, @sharks, feel much sicker when that is all the sleep we can manage to get.

    Sorry to ramble and to be repetitive, I am having a lot of cognitive difficulty today, because , as usual, I have gotten too little sleep. SO I see I am repeating myself, I Apologize for that! I truly do not mean to be overstating or dominating, I am just unable to edit my post properly.


    Sorry I cannot suggest anything helpful, for you sharks,
    but I do give you my understanding, that 3.5 hours of sleep is probably not enough, for you to feel however much better you can. And enjoy something you might otherwise be able to.

    It makes MY life MUCH harder, because it increases greatly, my sufferings from pain and lack of mobility and feeling ill all of the time that I am awake. I am unable to go outdoors, I don't have any strength or stamina, and I feel terribly ill.
    I am certain if I could sleep more than 4 hours in 24, that at least, my pain level would go down a little, even though I would still have my illness.
    Therefore my quality of life, while I am awake, would be improved.

    I guess this isn't true for some of the posters. They either live ok with little sleep, or they sleep more, but at different times of day.
    But for me, it is a real problem. A great difficulty for me. I suffer with it. Physical and mental suffering. Pain, brain suffering.
    Maybe it is for sharks as well, or for someone else who reads the posts, since it is for me,
    and because that is what the post topic is, as far as I could see. I could be mistaken but that is what I understood the topic poster to be stating and asking for and deserves.

    I am glad this is not a problem for other people.
    Just needed to express that it is a real problem for me,
    and might be for some others.

    My attitude toward it might help a bit, but does not replace an hour or 2 extra sleep, what that would do for my brain and body and functional ability.
     
    Last edited: Jun 12, 2017
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  13. Marigold7

    Marigold7 Senior Member

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    I read the OP as wishing not for more sleep but at a different time? And most of us were saying that to worry about it excessively would make life worse. He sleeps deeply and seems happy with that? Like night workers? That it is accepting that eases. I take codeine at night for pain and that helps, but sometimes I nap mid morning. and just accept it. It is what it is. I honestly have no idea how many hours sleep I get and am always exhausted anyways .
     
  14. caledonia

    caledonia

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    One more thing - check your medications. Certain medications will interfere with sleep and cause insomnia. My mom had ME and also severe insomnia for 20 years. I think she averaged about 4-5 hours a night and took naps in the afternoon to somewhat compensate.

    I found out years later that the beta blocker she was on depletes melatonin, and so can cause insomnia. Too bad, I didn't know in time to give her some relief. The beta blocker was for tachycardia, a fairly common ME symptom.

    So to find out about your medication - google the name of your medication and "depletes". Read several of the articles that come up to get a consensus. The book Drug Muggers may also be helpful.

    Clonazepam (Klonopin) is another one that depletes melatonin. I had issues with it and had to supplement with melatonin while I was on it and for about a month after tapering off and discontinuing. Ironically, it's often prescribed for ME patients for sleep or to calm restless legs.

    SSRIs can do the same, but a little more indirectly. Over time they down regulate the production of serotonin. Serotonin converts to melatonin. They also deplete B vitamins which can impact the methylation cycle and the production of neurotransmitters in general. Many of us are on SSRIs, as doctors hand these out like candy.

    Those are the ones I'm aware of off the top of my head. There may be more.
     
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  15. Marigold7

    Marigold7 Senior Member

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    The advice to google and check side effects is very very wise indeed.
     
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  16. Mary

    Mary Senior Member

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    All the suggestions about blue light etc. are good. I have one more. I've read recently that glutathione depletion can contribute to insomnia. As you probably know, people with ME/CFS are notorious for being glutathione deficient. I've recently started taking liposomal glutathione (homemade - will provide link below). It's too soon to tell if it's going to help but I'm going to keep it up, it's supposed to be good for me anyways. I've been dealing with horrific insomnia since doing a taper from low-dose but long-term lorazepam, so am trying everything I can get my hands on.

    Liposomal glutathione is expensive but this DIY method is not too pricey: https://www.hawkeshealth.net/community/showthread.php?t=6456

    I'm taking about 2 tablespoons a day. Crossing my fingers!

    And if low glutathione is implicated in insomnia, it might help explain why so many people with ME/CFS have trouble with sleep.
     
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  17. Marigold7

    Marigold7 Senior Member

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    Sympathise deeply re lorazepam as I went through the same but this policy is a mistake. Need to live through it and let your body sort itself out. I came off valium too ( yep. both at the same time) and it took my body 15 years to shed the damage it had caused. Wearisome I know but we do have deep self healing resources within us. Replacing one substance with another is .. Tempting but....
     
    Last edited by a moderator: Jun 13, 2017
  18. Marigold7

    Marigold7 Senior Member

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    Actually I tend to the other extreme of sleeping too long. In winter it used to be even up to 19 hours. Old age has its own ways and I go with it now. I avoid all so -called remedies as side effects and damage are too much.. As well as the M.e I have increasing arthritis pain now so tylex at night. No way the more modern drugs etc. I keep it all as simple as I can.
     
  19. Shoshana

    Shoshana Northern USA

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    This can be a very, very difficult problem. I hope the things you are currently trying, will help you, Mary.

    Yes, we need to be careful about which things we try, yet sometimes we each, do decide on trying something.

    Keep us posted, Mary. And thanks for the sharing.
    All the different sleep ideas are helpful for me to hear about and consider. We each make decisions best for our own situations and selves
    .
    Best wishes to you as well, Marigold. I am glad your decisions work for you. They overlap with some of mine. I am very choosy about trying anything. Glad you have found ways of coping that are best for you, Marigold. Glad you got off of valium.

    Dealing with only 2 hours of sleep so far, tonight, myself. Didn't get enough last night either, and was unable to nap today. Very difficult for me. Made my day harder. We each have our challenges, and our differing and overlapping, ways of coping.

    Thinking of you, @sharks
    Did you find any ideas for you to try for yourself?
     
    Last edited: Jun 13, 2017
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  20. Marigold7

    Marigold7 Senior Member

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    It took me 15 years in all and was sheer hell. All the benzos are the same . Made me very very wary of all drugs. codeine included BUT the arthritis and increasing sheer agony from Raynauds' at night, is appalling and rather codeine that some meds I was offered where you have to take a proton pump thingie an hour before! To protect your stomach.. It is not what is best for me or what works for me. Just what has to be done. I have to feed and care for my critters. I have to support the work my family overseas do. These things hold me to life and keep me sane. Things outside my life that make sense of my life, I was getting too introverted as chronic illness tends to do .

    I know, I do know. I still get nights like that but weather them; the art is not letting them win. Early today I was sleepless and in mental agony over something ..and in so much pain the thought of even turning over in bed was not on,,, Managed it and started the day, knitting, feeding the cats,. Lying wakeful is the worst thing.

     
    Last edited by a moderator: Jun 13, 2017
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