Delayed Phase Sleep Disorder or ???

[AlwaysTired]

So when I began having CFS two years ago, I was so profoundly fatigued and weak that I slept all the time without problem, day or night. As of late though, and also sporadically over the past two years, I'm finding myself dealing with something I have never ever dealt with in my life- insomnia.

On days that I'm not exhausted due to over doing it I cannot fall asleep until about 1am or so, unless I take a ton of diphenylhydramine (which isn't even an option any more, for reasons I can explain if anyone wants to know) and am profoundly, oppressively tired in the morning through afternoon (7am-2pm) like I've been heavily drugged to the point of near coma.

It's been happening more frequently the past month or so. I still get tired at 9 or 10 pm, go to bed at that time, then after 30min to an hour, I'm not tired any more. This would all be fine if it weren't for the fact that my body feels severely sleep deprived and wired in the mornings as a result . Even after 10pm or so I feel crappy, even though I'm alert- I feel a heaviness under my eyes that I usually only have felt in the past when I've been sleep deprived, and I am tired but my brain is alert and won't shut off despite it.

I just found out about DSPD (Delayed Sleep Phase Disorder) which kind of fits my new sleep pattern, I still feel over tired when I'm up past 10 or 10:30 like I did in my pre-CFS days, whereas it seems like with DSPD, sufferers feel fine at night, and fall asleep once they feel tired.

So I don't know what is going on!

 

[*GG*]

What is DSPD? You have to realize that there are tons of threads on this site, people have limited energy, so the More Descriptive you can make a Title, the better for all!

It could even help you Years from now, doing an Internet Search will likely lead to finding this thread easily!

GG

 

[Diwi9]

DSPD = Delayed Sleep Phase Disorder. Wikipedia

 

[AlwaysTired]

What is DSPD? You have to realize that there are tons of threads on this site, people have limited energy, so the More Descriptive you can make a Title, the better for all!

It could even help you Years from now, doing an Internet Search will likely lead to finding this thread easily!

GG

DSPD= Delayed Sleep Phase Disorder

Sorry for the confusion. I edited the title and thread to make it more clear.

 

[*GG*]

DSPD = Delayed Sleep Phase Disorder. Wikipedia

I have found Remeron to be good for my sleep, and a sound machine seems to help ccalm my brain down. They are cheap at Wal Mart, about $20 and I use the "White rain" sound, its more constant

GG

 

[caledonia]

#1 get off all computer, tablet or phone screens by early in the evening.

I need to get off by 8pm or my sleep starts moving forward. I had a non 24 hour pattern for years until I found out about this.

Other people might be more or less sensitive and need to get off screens earlier or later.

The mechanism is that the screens emit blue light which tells your body to wake up. For me it's delayed by a day or two. So if I stay on the computer later than 8pm on Monday, it doesn't affect me until Tuesday. Then it might take another day or two to resolve. So it's a little tricky to figure out.

So in general, your body likes to see blue light in the morning to wake up and amber light in the evening to go to sleep. That tells it to secrete the right hormones at the right time.

If that doesn't work, then you're into periodic limb movement disorder (aka lack of magnesium) or sleep apnea or something. Or maybe something to do with the adrenals.

 

[AlwaysTired]

#1 get off all computer, tablet or phone screens by early in the evening.

I need to get off by 8pm or my sleep starts moving forward. I had a non 24 hour pattern for years until I found out about this.

Other people might be more or less sensitive and need to get off screens earlier or later.

The mechanism is that the screens emit blue light which tells your body to wake up. For me it's delayed by a day or two. So if I stay on the computer later than 8pm on Monday, it doesn't affect me until Tuesday. Then it might take another day or two to resolve. So it's a little tricky to figure out.

So in general, your body likes to see blue light in the morning to wake up and amber light in the evening to go to sleep. That tells it to secrete the right hormones at the right time.

If that doesn't work, then you're into periodic limb movement disorder (aka lack of magnesium) or sleep apnea or something. Or maybe something to do with the adrenals.

About how early? I am usually off by 8pm since that's when I try to start falling asleep.

 

[caledonia]

About how early? I am usually off by 8pm since that's when I try to start falling asleep.

If you're going to bed at 8pm, probably several hours earlier, like 4-5pm? You may need to experiment with it to see if it really is an issue for you, and if so, what works best for you.

 

[anciendaze]

You may also need to take unusual care to avoid stimulants or large carbohydrate loads long before sleep. In my own case, I only use one cup of ordinary tea when I first get up, then avoid all sources of caffeine for the rest of the day. This includes things like chocolate which can stimulate you. Big deserts count as carbohydrate loads too. I also learned long ago that alcohol was not a solution. I might or might not sleep more quickly, but the following day was going to be a trial.

Another factor I've learned from the time when I was dealing with jet lag: an hour's exposure to sunlight in the morning does a great deal to resynchronize you with daylight. You don't need to do much, but you do need the sunlight.

I will admit that I am an extreme case. With luck you won't need such measures.

 

[TrixieStix]

So when I began having CFS two years ago, I was so profoundly fatigued and weak that I slept all the time without problem, day or night. As of late though, and also sporadically over the past two years, I'm finding myself dealing with something I have never ever dealt with in my life- insomnia.

On days that I'm not exhausted due to over doing it I cannot fall asleep until about 1am or so, unless I take a ton of diphenylhydramine (which isn't even an option any more, for reasons I can explain if anyone wants to know) and am profoundly, oppressively tired in the morning through afternoon (7am-2pm) like I've been heavily drugged to the point of near coma.

It's been happening more frequently the past month or so. I still get tired at 9 or 10 pm, go to bed at that time, then after 30min to an hour, I'm not tired any more. This would all be fine if it weren't for the fact that my body feels severely sleep deprived and wired in the mornings as a result . Even after 10pm or so I feel crappy, even though I'm alert- I feel a heaviness under my eyes that I usually only have felt in the past when I've been sleep deprived, and I am tired but my brain is alert and won't shut off despite it.

I just found out about DSPD (Delayed Sleep Phase Disorder) which kind of fits my new sleep pattern, I still feel over tired when I'm up past 10 or 10:30 like I did in my pre-CFS days, whereas it seems like with DSPD, sufferers feel fine at night, and fall asleep once they feel tired.

So I don't know what is going on!

I have Delayed Sleep Phase Disorder. I was diagnosed last year. Been a night owl and hater of morning my entire life. I do not believe they consider it DSPD unless a person cannot fall asleep until 2:00am or later. I sleep all day and am awake all night. I sleep fine I just sleep on a different schedule. Lately I cannot fall asleep until 8:00am or so and I usually sleep 10 hours sometimes more. When I try and force myself to sleep on a "normal" schedule my quality of sleep is much much worse. Unfortunately there are no effective treatments for DSPD. My sleep doctor told me to just go with the flow and sleep on the schedule my body prefers. I am lucky in that I am able to do so because I do not work and have no children.

Great sleep is almost worse than my normal quality sleep because when I have a really great extra restful sleep and wake up feeling better than usual I end up not being able to fall asleep until I've been awake for 16 or more hours which means I end up going to bed even later the next night so I end up waking up later the next day than the day before. And then if I have a doctor appt my sleep schedule gets totally screwed up and it can easily take me a week to get back on track.

 

[AlwaysTired]

Everywhere I've read it says 1am.

It sounds to me like you may be developing non-24 hr if your sleep time keeps advancing.

 

[TrixieStix]

Everywhere I've read it says 1am.

It sounds to me like you may be developing non-24 hr if your sleep time keeps advancing.

I actually just realized that the beta blocker I began taking a few months ago may be the culprit in my recent worsened sleep issues. It seems it is known to cause stressful dreams, nightmares, and insomnia in some people. I have stopped taking it as of yesterday and hoping I see improvement. It would be amazing if I could go back to sleeping from 4:00am-2:00pm. Goals!

 

[redaxe]

There is a treatment I read about (and have tried myself) that I have found has a good degree of success with controlling this. However it isn't easy but the results are worth the trouble.
Here is the articles that I found

https://sleep.med.harvard.edu/news/223/Reuters+Starving+may+fend+off+jet+lag

http://www.reuters.com/article/us-brain-clock-idUSN2252042720080522

Note that the subject is on jetlag but the treament suggested is relevant because there is some overlap with delayed sleep phase disorder. It's not that your body can't wake up it's that the body-clock is off.

Everyone accepts that the circadian rhythm governs day/night (wake/sleep cycles) and that this is based on light and dark. Well apparently this isn't the entire story - it is actually more complex.
The researchers have identified another body clock that actually overrides the circadian rhythm. Basically they were able to manipulate the sleep/wake cycles in mammals by feeding them at different times and changed the habits of normally nocturnal animals. What this shows is that food actually overrides the body's need for sleep. Which makes sense from a survival point of view.

So the solution is "A period of fasting with no food at all for about 16 hours is enough to engage this new clock," said Dr. Clifford Saper of Harvard Medical School, whose study appears in the journal Science.

So if you want to wake up at 8am stop eating at 4pm the previous day. So you should go to bed hungry basically. By the following morning the body will reset it's internal clock and wake you up to prevent you from starving.

If you are really badly affected by delayed-sleep-phase disorder you may need to do this more than 1 day in a row, and make sure you regularly eat dinner no later than 6pm (you know our ancestors lived like this all the time - only our tech-driven society has changed this).
Also cut stimulants out in the afternoon, install the flux app on any devices https://justgetflux.com/ or use orange tinted glasses and take melatonin an hour before you intend to sleep. Also a warm shower 15 minutes before bed also helps.

 

[Hell...Hath...No...Fury..]

I have DSPD, undiagnosed. My minimum bedtime has always been 2am. It only posed a problem back in the day when i had to be up at 5.30am for work.

Now its not an issue, its just my normal. I can fast for up to 3 days sometimes depending on migraines, it has no effect on resetting, nothing does. I don't try anymore.

I use doxylamine succinate as a muscle relaxant before bed which sometimes helps but never before 2am.

On the rare occassion that i go to sleep before midnight, i'll wake around 3am and that will be my whole nights sleep so i hate that.

Thanks to the doxy, i rarely stay up till sunrise anymore but it still happens sometimes.

Midnight is my favourite time of day. I don't fight it anymore, its just my norm.

 

[AlwaysTired]

There is a treatment I read about (and have tried myself) that I have found has a good degree of success with controlling this. However it isn't easy but the results are worth the trouble.
Here is the articles that I found

https://sleep.med.harvard.edu/news/223/Reuters Starving may fend off jet lag

http://www.reuters.com/article/us-brain-clock-idUSN2252042720080522

Note that the subject is on jetlag but the treament suggested is relevant because there is some overlap with delayed sleep phase disorder. It's not that your body can't wake up it's that the body-clock is off.

Everyone accepts that the circadian rhythm governs day/night (wake/sleep cycles) and that this is based on light and dark. Well apparently this isn't the entire story - it is actually more complex.
The researchers have identified another body clock that actually overrides the circadian rhythm. Basically they were able to manipulate the sleep/wake cycles in mammals by feeding them at different times and changed the habits of normally nocturnal animals. What this shows is that food actually overrides the body's need for sleep. Which makes sense from a survival point of view.

So the solution is "A period of fasting with no food at all for about 16 hours is enough to engage this new clock," said Dr. Clifford Saper of Harvard Medical School, whose study appears in the journal Science.

So if you want to wake up at 8am stop eating at 4pm the previous day. So you should go to bed hungry basically. By the following morning the body will reset it's internal clock and wake you up to prevent you from starving.

If you are really badly affected by delayed-sleep-phase disorder you may need to do this more than 1 day in a row, and make sure you regularly eat dinner no later than 6pm (you know our ancestors lived like this all the time - only our tech-driven society has changed this).
Also cut stimulants out in the afternoon, install the flux app on any devices https://justgetflux.com/ or use orange tinted glasses and take melatonin an hour before you intend to sleep. Also a warm shower 15 minutes before bed also helps.

Don't know if I can do the starvation part because hunger is one thing that keeps me from being able to fall asleep! I have started taking melatonin though, and that has helped a lot, but I am drowsy/brain fog during the day. I also am doing light therapy (with the sun, since it's out most days where I am) in the mornings.

I do need to install that app, though.

 

[AlwaysTired]

I have DSPD, undiagnosed. My minimum bedtime has always been 2am. It only posed a problem back in the day when i had to be up at 5.30am for work.

Now its not an issue, its just my normal. I can fast for up to 3 days sometimes depending on migraines, it has no effect on resetting, nothing does. I don't try anymore.

I use doxylamine succinate as a muscle relaxant before bed which sometimes helps but never before 2am.

On the rare occassion that i go to sleep before midnight, i'll wake around 3am and that will be my whole nights sleep so i hate that.

Thanks to the doxy, i rarely stay up till sunrise anymore but it still happens sometimes.

Midnight is my favourite time of day. I don't fight it anymore, its just my norm.

I don't envy your situation at all.

Before getting CFS, I had to motivate myself to stay up late, cause I wasn't naturally a night person. Wasn't really a morning person, either. I got tired easily and loved to sleep. I wouldn't mind the change in sleep schedule so much if it didn't make me feel sleep deprived (like while it's happening at night/early morning) and that's why I'm really fighting it. Cause even though I can't sleep, I'm tired at night, so I don't really want to do anything but lay in bed anyway!

I fell asleep last night at about 11, woke up at 2:30am this morning, and couldn't fall back asleep til 5am (this is after taking another melatonin). I've found that if I wake up in the middle of the night (which I always do) I have to take at least another melatonin to fall back to sleep. And I've so far had to take double the dose to fall asleep at night, and I am not a big person...

 

[caledonia]

I actually just realized that the beta blocker I began taking a few months ago may be the culprit in my recent worsened sleep issues. It seems it is known to cause stressful dreams, nightmares, and insomnia in some people. I have stopped taking it as of yesterday and hoping I see improvement. It would be amazing if I could go back to sleeping from 4:00am-2:00pm. Goals!

Beta blockers can deplete melatonin. You may be able to continue with it, if you add melatonin.

You can look up your particular drug by googling the name of it, and "depletes", and look at books like Drug Muggers.

It looks like they also deplete CoQ10. You may also want to supplement with that too.

My mom had ME and was on a beta blocker and experienced horrible insomnia for years as well as fatigue. I wish I knew then what I know now...

 

[TrixieStix]

I have DSPD, undiagnosed. My minimum bedtime has always been 2am. It only posed a problem back in the day when i had to be up at 5.30am for work.

Now its not an issue, its just my normal. I can fast for up to 3 days sometimes depending on migraines, it has no effect on resetting, nothing does. I don't try anymore.

I use doxylamine succinate as a muscle relaxant before bed which sometimes helps but never before 2am.

On the rare occassion that i go to sleep before midnight, i'll wake around 3am and that will be my whole nights sleep so i hate that.

Thanks to the doxy, i rarely stay up till sunrise anymore but it still happens sometimes.

Midnight is my favourite time of day. I don't fight it anymore, its just my norm.

Same here. Midnight is when I feel my best and have the most energy. And just like you on occasion when I do go to sleep earlier than my normal bedtime I also wake up after just a couple hours and cannot get back to sleep. Whereas if I go to sleep at my normal bedtime I sleep well and for my usual 9-10 hrs. I gave up trying to "re-set" my sleep schedule. With true DSPD it simply does not work thus why sleep doctors tell you to adapt your life to it as best you can. Unfortunately it's not something you can melatonin and/or sleep hygiene your way out of.

Also to anyone new to DSPD
make sure to never try "Chronotherapy" as it's been shown to cause DSPD to morph into N24 in many people and because of this it's no longer recommended.