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Stay up or go to sleep?

Discussion in 'Lifestyle Management' started by SteveRacer, Aug 2, 2010.

  1. SteveRacer

    SteveRacer Demon on Wheels

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    So, the last couple of days I've been exhausted the whole day... slept 12 hours... gone back to bed. Then around MIDNIGHT I've started waking up, feeling more energetic, able to do things.

    I tend to want to stay up at this point because I feel more alive and able to do things... but then I'm going to bed at like 5am or 6am, then in bed again most of the next day.

    Should I stay up, or try to have a more reasonable sleep hour?
     
  2. knackers323

    knackers323 Senior Member

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    I always feel better at night. I have heard other people say the same thing. anyone heard any theorys on why this may be?
     
  3. knackers323

    knackers323 Senior Member

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    could it have anything to do with vitamin D levels? do they fluctuate that rapidly from when the sun goes down? sounds crazy but there must be some explination because I definatly notice a marked difference.
     
  4. Esther12

    Esther12 Senior Member

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    I've always naturally been like this.

    I've had to stop in order to fit in with other people, but I often feel better and able to do more as my sleep pattern goes nocturnal.

    I'm not sure what to advise as to what's best. Sleep experts will consistently advise that it's better to maintain a 'normal' sleep pattern, but there also seems to be a growing ammount of evidence that some people are biologically better suited to later sleep patterns. But being nocturnal may mean you have more energy, but it also creates all sorts of additional inconveniences and potential problems, and it can be hard to switch back.

    One other thing - being nocturnal marks you out as 'weird', and will lead some to believe that you're not trying to get better: already common problems with CFS.
     
  5. ukxmrv

    ukxmrv Senior Member

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    I have much better functioning if I stay up at night and sleep during the day. However, I can from a family of nights owls and many of us report the same thing.

    It does disturb that that you are reporting this over a matter of days, rather than being a "entire illness" or lifetime thing.

    For me the sleep/alert periods corresponded with my cortisol production, which is low anyway. The highest (but still low) cortisol times were in the afternoons and evenings.

    Trying to reset my body clock to a normal time frame, resulted in a much less active functioning level resulting in very severe physical/mobility problems. Sleeping during the day and being more active at night is no where near a cure for me though - it just increases when I can do (i.e. bathing, brush hair, pay bills and survive a little better).

    Do you feel better at night (for example) than you are felt during the day for years or whatever triggered your illness? It may just be a temporary thing related to the last few days or not.
     
  6. anciendaze

    anciendaze Senior Member

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    early/late activity and sleep

    This is a typical CFS/ME question, and, after trying a variety of techniques, I end up in the same camp as many sleep experts.

    The reason for this lag is tied to known regulation problems along the hypothalamus/pituitary/adrenal (HPA) axis, (for those who recognize CFS as a disease.) You can check part of this without elaborate laboratory tests. Just record how you feel at different times of the day, paying attention to some aspects mentioned here.

    You start out at the low point in the cycle with cortisol levels that would make Addison's disease a possible diagnosis, if they persisted. (If you ignore warnings and push yourself long enough and hard enough, it is possible to end up with something very much like the real thing. Adrenal glands can burn out.) At this point in your cycle, you feel all those aches and pains. If you have an actual bruise or local inflammation, it will bother you most at this time. As you struggle out of bed, through breakfast, out of the house, etc. you will be calling on your adrenals to produce cortisol to get your body moving. They will be slow to respond.

    Still, if you make it out of the house, though traffic, and into a doctor's office, (where you wait for half an hour,) you will look remarkably normal in a clinical setting. If your adrenals failed to respond, or you were not excited by the dangers of the road, you might reach your doctor in a state close to adrenal exhaustion -- assuming you were not involved in a traffic accident.

    Every effort throughout the day makes similar demands for increased cortisol. At some point, usually late in the day, the rest of the HPA system begins to catch up. As your cortisol level rises, you become less conscious of those aches and pains, or exhaustion. By the time you reach normal bedtime, you may be ready to party, or as close to this as CFS/ME patients get.

    In my opinion it is vital to begin applying the brakes hours before you plan to sleep. You've built up considerable momentum in your endocrine system (if experts will forgive me for such an analogy) and need to make an effort to slow down. You should start hours earlier by avoiding stimulants, except for a very limited amount needed to avoid disaster when you start your daily activity. (Automobile accidents have a decidedly negative effect on prognosis. Falls down stairs are no fun either. Even avoiding those, I've accumulated most of my bruises soon after starting daily activity.)

    Even if you are getting adequate vitamin D from supplements, I recommend getting sunlight early in the morning to keep your diurnal cycle connected to the Sun. (This is also useful for jet lag.) When you need to shift your cycle, limit sleep during normal active hours to short naps. Do your best to get several hours of sleep at night. Sleep less than two hours will shortchange you on some aspects of rest. (In my case, less than four hours leaves me short of dreaming sleep.)

    You can tell how you're doing with sleep by some indications which are also found in sleep clinics. If you are short of dreaming sleep, you start that phase of sleep more quickly to make up. (The technical term is 'reduced REM latency'.) If you are very short, you will be on the edge of hallucinating while awake. If a chance disturbance wakes you soon after you fall asleep, and you come out of a wild dream, this indicates your REM latency is low. This is a classic problem for CFS/ME sufferers.

    I would be interested to hear from anyone who knows about diurnal variation in melatonin levels.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have heard of other cfsers who just sleep when they feel sleepy and stay awake when they feel alert, if this works for you and u dont have work committments or can work around such a sleep clock and dont feel sleep deprived then maybe just go with it. I have gone through funny sleep cycles like this but it didnt fit around my work committments and i resorted to sleep meds plus my sleep length and quality are quite poor. How i sort of got out of it was use melatonin(by itself doesnt help me sleep though) with other sleep meds to try and correct my body clock, why i said sort of is i do rotating shift work where i would do a couple of day shifts then an afternoon shift followed by 1or2 night shift then days off, so sleeping during the day to rest up for a night shift was necessary. I just think my sleep 'thingy' is broken from over 20 years of shift work and cfs for the last 8 years. Natural sleep is a rare thing for me.

    cheers!!!
     
  8. alex3619

    alex3619 Senior Member

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    Hi anciendaze

    I think cortisol has something to do with it, but I doubt it is a major player. Its more like an exacerbation factor. Let me first give the usual caveats - much of what I am about to say is based on my own experience, and anyone elses problems may be different.

    First, when I was last looking at circadian factors in depth, I found that light stimulus (which is bound to melatonin production) was one of something like fifteen factors that regulate sleep cycles. Most of these factors are either disturbed in CFS or thought to be disturbed. I have forgotten the entire list, this was a decade ago and I have only dabbled in this area since. I do recall that NMDA (glutatmate) activity was one of them. In addition the actual trigger and maintenance of sleep was linked to a prostaglandin (D2/3?) which is released to shut the brain down. This means it is strongly affected by oxidative stress, both from shutting down production and damaging the hormone.

    Melatonin has two response windows - one in the morning and one in the evening. I think there was research that showed that this window is phase shifted in CFS patients, which is why melatonin doesn't always work - if you know the phase then the chance of melatonin working increases. It might not be just before bed time.

    I think the cortisol problems are linked to this sleep phase problem, and drive the cortisol production. As such cortisol variation during the day could be used to track circadian issues, but it is more a marker than a cause. I have never actually tried this however, so I could be wrong.

    In my own experience, there are multiple phases to this problem. I have had CFS for a very long time. The only other long term patient I know who has symptoms that closely resemble my circadian problems is guy, so I do wonder if this is not more a male CFS symptom rather than a broad CFS symptom, but there are lots of female CFS patients who have circadian symptoms too, so I am not sure. In the early days I had insomnia. No big deal. Then severe insomnia some years later - I would be awake for up to three days at a time, and would eventually collapse in exhaustion. Around a decade later I came down with circadian disruption - my sleep/wake cycles would shift by an average of an hour a day (25 hour days) and I spent the next eight years fighting it. When I did so I could function better in the world to a point, but my fatigue, pain, OI and brain fog got markedly worse. When I finished my B.Sc. and faced having nothing to do with the rest of my life, I gave in to the circadian dysruption. My symptoms all markedly improved. That was seven or eight years ago. After a while during this latter period, my circadian patterns became less regular, sometimes shifting by six or eight hours at a time not one, always in the direction of going to bed later.

    Now, however, I have discovered there might be another phase beyond this. Some months ago I had a short period where I seemed to lose my circadian patterns entirely. My sleep/wake cycle was 4-6 hours long. Wake for a few hours, sleep for a few hours, repeat indefinitely. After some days this seemed to go away. A few days ago it was back, and I have only partially recovered at this point, able to stay awake for about six hours now.

    I suspect this problem is progressive, and I worry that it might lead to something that resembles narcolepsy. The last thing I need is to fall asleep during one of the increasingly rare periods I am capable of going out in public, like when I need to vote in a few weeks (if I haven't lodged a postal vote).

    Bye
    Alex
     
  9. alex3619

    alex3619 Senior Member

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    PS I am not convinced that early morning light is necessary. However, more recent research does point to getting as much light in the morning as you can, and as little in the afternoon as you can. Even artificial light has some impact. Wear sunglasses if you have to go out in the sun in the afternoon. Also avoid bright light in the evening - artificial light such as a computer screen does have an impact.

    Bye
    Alex
     
  10. taniaaust1

    taniaaust1

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    My opinion is to just do whatever makes you feel the happiest and makes you feel physically the best. It's more logical to me to do whatever you want to do, whenever you feel the best to be doing it, instead of struggling and pushing your body at a time when its struggling more to do something.

    Part of my improvement has been the fact that I started to listen to my body rather than what others thought I should be doing.
     
  11. SteveRacer

    SteveRacer Demon on Wheels

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    Interesting stuff. Thanks for the advice. Yes, I've always been a night owl, never a morning person... but this just amplifies it. Now I only seem to have a few good hours every day...
     
  12. anciendaze

    anciendaze Senior Member

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    alex3619,

    I think you are right about the delayed sleep phase. It is a more specific symptom than 'sleep disturbance'. I've long been so far out I can fly west over three time zones without a problem. Going east is far rougher.

    Note I said the HPA is disregulated, not that cortisol is the original cause. One reason I emphasize cortisol is that it is relatively easy to test. Another may be peculiar to me.

    I am unusually sensitive to steroids, even after dosage is adjusted to match my weight. My most dramatic response took place when I asked an allergist to help me clear my ears before I was scheduled to take an international flight. After a shot of Prednisone, I was able to complete preparations and make the flight. The catch was that I did not sleep for two full days. Fortunately, people at the other end did not put me in a mental hospital.

    (There are lesser disasters from desynchronization. One unnamed acquaintance of mine flew to Tokyo, and set a loud alarm to wake him for an early meeting. When it went off, he was having a nightmare about earthquakes. HIs Californian reflexes said to get out of the house. He ended up locked out of his room, naked, in a posh Tokyo hotel.)

    I would agree that there are a number of stages to these problems, and different people are likely to be at different stages. I'm afraid I'm now at a late stage when I'm just hanging on to what capabilities I have left. I wonder what would have transpired if I had been more cautious earlier.
    ------
    My advice on the original question:

    I can only say that times when my circadian rythms were completely disrupted corresponded to my worst mental states. Yes, listen to your body about when you can work most effectively. No, don't let it dictate everything, it has no foresight. Pace yourself.

    I've had many cycles of overexertion and crash when I stayed up because I felt good. Learn to quit while you're ahead.
     
  13. Hope123

    Hope123 Senior Member

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    I thinks it's also related to cytokine levels. Cytokine levels fluctuate throughout the day in normal healthy folks and, at least with some FM/ CFS studies, there is some evidence our nightime cytokine levels don't go up or down as they should compared to normal people. Some researchers believe this partly explains our problems with getting to sleep, staying asleep, etc.

    I know personally that I did not have ANY problems with insomnia prior to CFS and functioned well on 6.5-8 hours of sleep a night. One of the first signs of CFS for me was insomnia that I could not figure out since I am not an anxious person, didn't have any unusual stressors at the time, did not drink caffeine regularly, etc.
     
  14. ukxmrv

    ukxmrv Senior Member

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    Steve,

    I am the same. Always a night-owl but having this disease (acute viral onset, totally well before hand) accentuated what was a natural tendency. The cortisol test corresponded but there are sure to be other things happening.

    For example (thank you Hope123!) the cytokines probably play a part of me. When I get the bad sore glands /throats or a viral flare-ups one of the warning signs is that the delayed sleep gets much worse.

    Trying to apply things that work for non-ME people is pointless for me. Early morning light has absolutely no effect on this. We need to quote research on people with ME and not enough is known about when we secrete hormones etc.

    I had no problems sleeping before ME struck - the night owl tendency was not marked and allowed me to function well in the world during the day. I slept well at night, albeit a little later than most people and woke refreshed.

    Now I only have a few precious "almost human" hours in the evening if I sleep late through the morning. Changing this takes those hours away from my completely and increases my disability.
     
  15. PhoenixDown

    PhoenixDown Senior Member

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    It's called a non-24 circadian rhythm. Problem is depending on where you live there is a lot more noise during the day and this can severely disrupt sleep quality. There are also other problems like turning up to appointments on time, shop opening hours, etc.

    But I agree if you can get quiet sleep and don't have any commitments then sleep when ever is best for you. Don't listen to the "getting up early is best for everyone" mantra. Some people get it into their heads that anyone who claims to suffer by not following that mantra must have a behavioral disorder, they refuse to believe any evidence that contradicts them.
     
    Ocean likes this.

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