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Anyone experiences inversion of circadian rythm?

Discussion in 'Sleep' started by Hope78, Jul 10, 2018 at 7:13 PM.

  1. Hope78

    Hope78 Senior Member

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    Hi there,

    I've always been a night owl but since I got worse with CFS my circadian rythm is shifting a lot (feeling awful during the day and better at night). I am currently going to bed between 4 and 6 am, then sleep for 3 hours, lying awake another 2-3 hours before getting tired again and then sleep in til 2 or 3 pm.

    I know its not healthy but every time I tried to shift my rythm (melatonine, light therapy sleep compression) I collapsed badly and needed weeks/months to recover. I never fully recovered from my last try under the supervision of an experienced (but stupid) sleep therapist.
    I pressured myself a lot bc the sleep therapist told me I was damaging my internal clock to the point there's no way back so I have to force myself out of bed at a normal time. So thats still in my mind and I feel very uncormortable with my sleep rythm.

    On the other hand I am so sleep deprived and loss of sleep is my main cfs crash trigger so I dont feel I am in the position to work on a more healthy sleep cycle right now.
    Sounds familiar?How do you handle it? Just sleep when you can sleep, taking of the pressure? I just read in the canadian consense document that a shiften sleep wake cycle seems to be typical for CFS?

    I am a bit worried that I wont catch any daylight when it comes to wintertime.....

    Thanks for reading!
     
  2. Neunistiva

    Neunistiva Senior Member

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    Yeah, it's really common.

    It's part of ICC as well

    a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
    There's a list here on Phoenix Rising of sleeping medication that different clinicians use and some people found helpful.

    I personally had awful and scary reactions even to subclinical doses of sleeping meds so I gave up after trying two different kinds. I found I feel the best when I sleep whenever I feel sleepy, and don't stress about it when I don't feel sleepy.

    I had completely messed up circadian rhythm for 8 years, sleeping all day being awake all night, or sleeping 5 or 6 times during the day for an hour..... In the last year it completely normalized (so your therapist is wrong).

    Now I fall asleep around midnight and wake up around 9 and I feel worse than ever. I am completely bedridden. So much for importance of circadian rhythm .

    P.S. make sure you take vit d supplements if you sleep all day long
     
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  3. Lisa108

    Lisa108 Senior Member

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    Yes, I do experience it. (Anyone here who doesn't?) It's 2:18 am here in Germany, I'm still awake. I've tried everything you mentioned (and GABA). Nothing worked or stopped working after a short time.

    I'm now going to bed when I feel I can sleep and don't forcibly stay in bed when I can't. It makes me crazy to just lie there, listening to my boyfriend's snoring and fearing to wake him up with my tossing and turning.

    Sometimes it is better, sometimes it is worse. For me, winter or summer didn't make a difference on my sleep pattern, only on my mood ;). As you said, fixing that rhythm is out of my control right now. I think it will regulate itself when the cause of this disease is treated.
     
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  4. alex3619

    alex3619 Senior Member

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    Circadian inversion is common in ME, as has been said. I tend to see it in patients who have been ill over three years, and see it a lot in people who have been ill over a decade. There are no good therapies, though some can help in the short and maybe medium term. Its not understood. In people who are blind its due to loss of entrainment with the day night cycle because they do not see light, but this tends to be non-24 rather than inversion. In others its often other things, and I am not sure we understand what is involved.

    I personally run with a free running circadian rhythm. Fighting it leads me to become massively sleep deprived, which leads to my orthostatic intolerance going out of control, which leads to me passing out all over the place, including up to three times in five minutes. Its dangerous for me to do that. OI like that can be fatal or lead to severe injury.

    Being a nightowl or having insomnia is different to reversal, which is different to non-24 circadian disorder, but its all connected I think. I personally think there is a stage after that in which the circadian rhythm totally shatters, and there is no cycle at all. I occasionally wind up in that stage.

    Regular insomnia or trouble falling asleep or staying asleep does have treatments though. So it really depends on the severity or stage of the sleep problem as to whether or not it can be treated. Similarly a mild loss of entrainment can be treated with light therapy, melatonin, etc., though the success varies. Non-24 and worse have no long term effective treatments that I know of. Some treatments might work for a few years but eventually they fail for a large percentage of patients, according to what I have read.
     
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  5. Hip

    Hip Senior Member

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    Sleep cycle inversion is a big problem in ME/CFS. In some ways there are advantages though, as the night is very calm, quiet and tranquil, which is good when you have ME/CFS symptoms like sound sensitivity, and when the hustle and bustle of daily life seems to fast and frenetic for one's frail, slow and brain fogged mind. But it becomes a problem when you have an appointment or social engagement during the day.

    What helped me was this approach:

    Sleep Cycle Inversion (Awake At Night, Sleeping During Day): A Simple Technique Fixed This For Me
     
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  6. Judee

    Judee Senior Member

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    Yes! Last "night" :rolleyes: I went to bed at 4:33am.

    I too have tried to move it back. However, when I tried going to bed at 2:30am I get the same pattern you have--sleep 4 hours, up for 3 hours, nap 2 hours. At least with the 4:30am I can sleep until 11:30am so it feels like 7 hours solid. Even if I do wake up during that 7-hour schedule, I go back to sleep almost right away.

    I wonder if it wouldn't be better to keep moving it forward though by going to sleep one hour later each time until we've worked ourselves around the clock and are back on a regular schedule. That actually seems a lot less jarring to the ME/CFS body than trying to go to bed earlier each night.

    On a side note, as something gentle to help me I do like cherry juice. I just drink about 2-3 ounces and that seems to help me sleep a bit more deeply. (Knudsen Just Black Cherry juice tastes just like bing cherries. Yum!!! :p)

    Oh, and I feel best at night as most of you do so I can at least manage to do a few things that I cannot cajole myself into doing during the daytime hours.
     
  7. sb4

    sb4 Senior Member

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    Before I got CFS I also used to be a night owl, but then I got interested in circadian rhythm and ever since my sleep/wake times have been good. What was key, for me, was using blue blockers (or f.lux / iris on pc) when the sun goes down and then getting strong sunlight in my eyes as sun as I wake up and throughout the day.

    Basically, the human eye, skin, and brain have been designed over millions of years of evolution to see deep blues before sun rise, balanced blue and red + IR @ sunrise, Vis+IR+UVA soon after, the amount of sky blue continuously acending, then Vis_IR+UVA+UVB if it's summer; and then the reverse of this proccess, followed by pitch black at night.

    Each of these wavelengths of light have particular signalling effects to the brain via mainly the eye but also the skin. For example, sky blue destroys melatonin and increases cortisol, great for day time, terrible at night. UVA light is the signal to turn off the pituitary and start building melatonin and dopamine in the eye.

    The point being, if we are giving our body the incorrect light signals, it will struggle to maintain correct circadian rhythm. Have you ever been out camping and fallen fast asleep soon after sundown despite it being way earlier than your usual bed time? Perhaps you could try installing f.lux on your computer and getting as much sun as possible in your eyes (if that's possible) and hope your body slowly starts to regain it's rhythm.
     
  8. wastwater

    wastwater Senior Member

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    I have this all the time trouble waking up all day long then trouble shutting down always inverted sleep
    I just go with it now and sleep in the day mostly
     
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  9. Moof

    Moof Senior Member

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    I battled sleep inversion for a couple of decades, but about six years ago my circadian rhythm normalised for no obvious reason. I guess I just wanted to say, as others have, that the problems you're having now don't mean that your circadian rhythm will be shot for the rest of your life. It may change all by itself, and will almost certainly do so when we have better treatments for ME. For the time being, I'd just go with what your body's telling you it needs.
     
  10. alex3619

    alex3619 Senior Member

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    This is how many of us have done it. It fits with the 25 hour sleep cycle. However over time the capacity to stop it at that point diminishes in many of us. I used to do this all the time. I don't any more.
     
  11. alex3619

    alex3619 Senior Member

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    Given that brain issues in ME seem to go away in temporary remissions there seems a very good chance that once we have effective ME treatments then many of these problems will vanish or diminish.
     
    Moof likes this.
  12. Hope78

    Hope78 Senior Member

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    I did all this and still use blue light blockers, but I dont notice any difference, sadly. But glad it worked for you :)
     
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  13. Hope78

    Hope78 Senior Member

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    Thank you for saying that, thats really very encouraging. I love the day and the sunlight so I find it hard to miss it. At the moment its still ok bc we have summer here, but when winter comes and my rythm will shift any further I will end up as an vampire. But for me - at least at the moment - its sleep over light. And hopefully that will shift one day!
     
  14. Hope78

    Hope78 Senior Member

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    I was thinking about that too (shifting my rythm to one hour later each time. But as you wrote my energy is best at night/late evenings. So once my rythm will have shifted back to a normal pattern I will probably have less energy!? Just a suggestion, I guess I'll have to try.

    But sleeping early in the evening was never for me, during my healthiest times the earliest time I managed to go to bed was 11 pm. And that was reaaaallly early for me. My nick name as a young child was "owl" and I always felt best in the evening. Best time for sport, learning, being active. Now, with ME/CFS this pattern has become extreme.
     
  15. Wolfcub

    Wolfcub Senior Member

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    Oh I have a completely messed-up routine when it comes to what clock time I go to sleep and wake up. I actually don't care any more. It's never before 1am unless I've had no sleep at all the night before and been awake 36 hours. Then I can sleep at ....maybe 11? My usual rhythm is approx 2am to 10am. That can vary by an hour or so each side.
    But occasionally I can't sleep until 4 or so and then only get 6 hours.

    However I don't know if it's related to what's going on with me or not because I've had that tendency all my life and never was a natural crack of dawn person. To get up at even seven a.m. I used to have to have two alarm clocks. And the earlier I got up the worse I would feel all that day.
     

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