Delayed sleep pattern

Lucinda

Senior Member
Messages
118
Location
UK
For years now I have had a delayed sleep pattern. At its latest I was sleeping between 6 - 7am to 1 - 2pm every day. However I managed to get it forward a bit by taking prescription sleeping pills every night for a while. I got my sleeping to 2am - 10am but then run out of pills. Since then it has slipped back a little and I go to sleep anytime between 2 and 5am.

Has anyone had any success in bringing their sleep pattern forward? I would like to have a more normal sleep pattern, but don't know how to bring it forward without taking more prescription sleeping pills. I have tried pretty much all of the herbal and non-herbal pills you can get without a prescription but none of them are strong enough to get me to sleep earlier. Meanwhile, my doctor has said that I have already had quite enough sleeping pills and doesn't want to give prescribe me anymore.

Any ideas as to other ways to get my sleeping pattern forward?

And is it important to get a delayed sleeping pattern back to normal? Does it really make much difference?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Lucinda,

This topic comes up quite often on these forums. You can fight your sleep pattern, and fit more into a normal world, but it is my experience and that of some other patients that not fighting it leaves you with fewer symptoms and more functionality - but at inconvenient times. Keeping your sleeping pattern in check is only important, in my view, if you absolutely have to function in a 9 to 5 world. Otherwise, I suggest not fighting to keep normal sleeping times.

I fought my sleep problems for many years. Now I don't bother.

Most of the patients with this problem at a severe level have been sick for a long time. I was diagnosed 21 years ago, and probably had ME or CFS for 42 years. If you don't mind answering, how long have you had ME or CFS for? Other patients I have talked to usually describe their onset 10, 15 or more than 20 years ago. It seems to really kick in a the 15 year mark and just keeps getting worse.

Recent research on sleep may indicate it has something to do with body temperature, although the neurological pathways that regulate sleep are quite disturbed - at least four or five mechanisms seem to be combining. I keep wanting to look into this further, as sleep research has advanced a lot since I last looked into it, but I never seem to find the time (aka energy).

Bye
Alex
 

Lucinda

Senior Member
Messages
118
Location
UK
Thanks Alex.

I have to say, I have only had ME for 7 years. However, I started developing a delayed sleeping patter quite soon into my illness. I can't remember when it began, but I have been sleeping late for at least 5 or 6 years. I have also suffered a great deal from insomnia in the past, though now I only suffer insomnia very occassionally.

I do get what you mean though. When I was taking pills to get my sleeping pattern forward I felt more ill. I don't know if this was due to the sleeping pills or making myself sleep earlier though. It took a long time to adjust, and I had to do it very gradually, as if I took a pill too early I would end up not sleeping at all. I'd just feel like a zombie. Even after going through all that though I only got it forward a few hours, and it has gradually slipped back a bit since.

It really isn't that important for me to sleep at normal times as it's not like I work or anything. It's just I read on Dr Myhill's website that it was important to correct a delayed sleeping pattern so wondered if I should make a renewed effort. It's interesting to hear you take a different view though.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi LaurelW,

I have tried prescribed melatonin several times, and spent many years with light therapy. Neither worked. They don't work for everyone, but are probably worth a try. Sleep hygiene methods also didn't work. I also have sleep apnoea, but I am one of about half the CFS patients on whom CPAP doesn't work either. Similarly I have rhinitis that is worse when asleep, but steroidal sprays don't work. I tried an SSRI once that had drowsiness as a typical side effect, and it almost killed me. The dose of sleep medication I was on once should have knocked out a horse (this was in the 80s) but I stayed awake another two days while on it. Go figure. Like everyone else, many with CFS can have standard sleep problems. It seems to me that the rest get the the other kind, and since there is no research on CFS specific sleep disorders, every doc just hopes the standard techniques work without any real idea of what they are doing.

bye
Alex
I have two family members with delayed sleep phase syndrome. You can treat it with low-dose melatonin and light therapy. See http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome

PS The type of problem I am talking about makes delayed sleep phase syndrome look very mild. The wiki article you referred to calls it: Non-24 Sleep-wake syndrome.

http://en.wikipedia.org/wiki/Non-24-hour_sleep-wake_syndrome

This is claimed to be treated in the same way, however. Severe delayed sleep-phase syndrome is considered to be severe at a four hour delay. I don't consider a four hour delay to be even a mild problem. What many of us have in the long run is much worse. It starts as mild insomnia, moves to delayed sleep phase syndrome, then finally becomes the non-24 syndrome. This seems to take about 15 years, and not everyone has it. To make it worse, I am showing signs of completely losing my circadian regulation altogether. Alex
 

heapsreal

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10,210
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australia (brisbane)
I had the 5am till 11am sleep pattern going, but like alex said it depends if u have to fit into the outside world, which have i to do to work and support my family and Im not as sick as others too. What has helped me is melatonin but on its own doesnt do much, but i take it with other sleep meds i use, one is usually to help initiate sleep like zopiclone and one to sustain sleep like mirtazapine or doxepine. I do swap and change between my sleep meds so i dont build a tolerence to them and now i sort of have a normal sleep pattern i dont use melatonin as much. I still work shift work so use once my shifts are finished I then use melatonin to help reset my body clock.

cheers!!!
 

Lucinda

Senior Member
Messages
118
Location
UK
Unfortunately I don't do well with melotonin. When I tried it, it did make me sleep (when I got the dosage right) but I got nightmares and felt depressed in the morning. I put up with these effects for a while, but then the depression got worse and worse and started to infect my entire day. I figured in the end that I'd much rather have a delayed sleep pattern than depression! So I stopped taking them, and right away the nightmares and depression went.
 

LaurelW

Senior Member
Messages
651
Location
Utah
Now they are recommending super-low doses of melatonin. Used to be that 3 mg was the standard, and now it's something like 0.5. Melatonin used to work for me years ago but now it hardly makes a dent in my insomnia. I have yet to try the tiny dose, though.
 

caledonia

Senior Member
As long as you don't have to work, my suggestion would be not to fight your sleep pattern and just roll with it. Make your doctor appointments in the afternoon, etc. I think it's much more important to make sure you're sleeping solid and feeling refreshed when you awake.

My sleep pattern so delayed that it just keeps on moving. It moves about a half hour later per day, so I'll be more or less normal for a few weeks, then reversed for a few weeks and so on. It's be going like this for years.

I've narrowed it down to two things. One is a corn allergy. The corn would make it move an hour a day. But the basic thing seems to be adrenal exhaustion. My adrenal profile is almost 0 in the morning and throughout the day, then slightly higher at night. This is the opposite of a normal adrenal profile. This makes me more active at night and then of course I don't feel like going to sleep until I'm really exhausted.

I finally found an adrenal treatment I can tolerate, so I'm hoping that in a year or so, when my adrenals are fully recovered, I'll have this problem licked.

I did a sleep study and they had no idea why my sleep would keep moving like it does. However, they did find restless legs and no apnea. Just finding the restless legs alone was worth doing it. Now I take large amounts of magnesium which helps that.

I also take 1.5mg of melatonin, and that's all I take for sleep. I also have acid reflux at night which manifests as waking up with my heart pounding. I sleep on a wedge pillow and wait an hour after eating before sleeping, and that mostly helps that.
 

JPV

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858
Now they are recommending super-low doses of melatonin. Used to be that 3 mg was the standard, and now it's something like 0.5. Melatonin used to work for me years ago but now it hardly makes a dent in my insomnia. I have yet to try the tiny dose, though.
There is some evidence that, with certain individuals, less is better. Some people may actually even experience severe insomnia at high dosages. I haven't had very much luck with it until trying low doses over the last few days. Around 500 mcg seem to work best for me, so far. Still experimenting with it though...
Scientists pinpoint dosage of melatonin for insomnia

"According to our research, the physiological dose of melatonin of about 0.3 milligrams restores sleep in adults over the age of 50," said Wurtman, lead investigator in the study. "The adults who would normally wake up during the second and third thirds of the night were able to sleep through the night with the 0.3 milligram dosage."

The researchers also discovered that the typical health food store dosage of melatonin, which is about three milligrams (or 10 times the dosage in the study), is less effective in treating insomnia. In addition, the higher dosage can cause potentially serious side effects, including hypothermia (low body temperature). The study also showed that the higher dosage elevated plasma melatonin levels during the day, which can cause a "hangover" effect in some of the subjects.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I've reset myself temporarily by going to bed later and later until I was in sync with the rest of the world, but it doesn't last too long. I have to force myself to go to bed between 2-3 AM. Trazodone helps with the sleeping but not the schedule. I also tend to feel better after about 11 PM. I've been a Night Owl my entire life anyway.
 
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