Bizarre sleep pattern

[Pibee]

yes, this


i hope i don't get this bad, though i would like to know what the mechanism is, neurologist insists its genetic because all non 24 is genetic. He knows nothing of ME/CFS so i'm not sure how much stock to put in this belief.

genetic but nobody in my family had it? i was told by someone who did rituximab --she is pos for 7 celltend antibodies..- that rituximab fixed her delayed sleep.. maybe she is member on s4me, not sure.. so in her case seems just another symptom.. N24 is just when DSPS gets too bad, as you know..

in peson i know 3 other people who had it, coincidentally they all have chronic infections and autoimmune... MS..seems like when these neuro-immune illnesses go to extreme it's almost inevitable.

sleep disoder is maybe even bigger obstacle for me to be able to wok full time , than ME/CFS. i dont know...highly likely..

 

[Pibee]

p.s. i've seen very good article on cicadian sleep disorder and purinergic signaling, eATP... all Naviaux stuff.. trying to find it, forgot where i read it

 

[Alvin]

Light related circadian setting was only one out of maybe fifteen different factors that I found more than a decade ago in the scientific literature. This is just about the SCN as well, we know nothing about the other sleep center. I forget the details now, but most of these factors are known to be disturbed in ME. Even a high level of oxidative stress in the brain can cause issues, including failure to synthesize sufficient PGD2 for sleep. I suspect this area of medicine may be dominated by unproven theory.

Another issue is that for ME patients we acquire this much later in life than most genetic disorders, though by no means all.

I can tell you that raising PGD2 has no effect on my non 24. And its not hard or expensive to do, its an effect of the niacin flush.
Can you tell us what this other sleep center is?

genetic but nobody in my family had it?

mine either, as i said i don't think mine is genetic, but a ME/CFS treatment will be the ultimate test

N24 is just when DSPS gets too bad, as you know..

Based on what?

sleep disoder is maybe even bigger obstacle for me to be able to wok full time , than ME/CFS. i dont know...highly likely..

the ME/CFS is worse for me but non 24 does make almost any job involving other people impossible

p.s. i've seen very good article on cicadian sleep disorder and purinergic signaling, eATP... all Naviaux stuff.. trying to find it, forgot where i read it

If your referring to the ATP/glymphatic system discovery it is not a sleep control center, its an analogous system to the lymphatic system that works only in the brain to clear waste during sleep.

 

[alex3619]

I can tell you that raising PGD2 has no effect on my non 24. And its not hard or expensive to do, its an effect of the niacin flush.
Can you tell us what this other sleep center is?

This is not a guaranteed effect of anything. It requires omega-6 fat substrate, and reasonable levels of glutathione, and is easily blocked.

The other sleep center was only discovered last year, in the brain stem. We know next to nothing about it. I think it was discussed on this forum.

 

[Alvin]

This is not a guaranteed effect of anything. It requires omega-6 fat substrate, and reasonable levels of glutathione, and is easily blocked.

Right, can you provide references?

The other sleep center was only discovered last year, in the brain stem. We know next to nothing about it. I think it was discussed on this forum.

It hasn't been named yet?

 

[alex3619]

Right, can you provide references?


It hasn't been named yet?

References? I have looked into this for two and a half decades. Look up any enzymology reference text. D6D and D5D (delta desaturases) are regulated by reduced glutathione status, though other things are needed too. Reduced glutathione is depleted in our brains, probably as a result of oxidative stress. Lipoic acid helps recycle it, and is also needed for pyruvate dehydrogenase, so there might be a link there too. The desaturases are also the primary targets in salicylate sensitivity, salicylates including aspirin inhibit them. Further the prostaglandin D2 has a half life of minutes. The brain has to keep making it, as do mast cells. I am not sure of the exact half life, the last time I looked it up the literature varied and I no longer recall the figures, but it was something like ten to thirty minutes depending on the assay.

The brain stem sleep region is so new we know almost nothing, as I said. Check Phoenix Rising, I think it was discussed there. I have no references handy. In fact much of my reference data is locked in a corrupt SSD drive and is irrecoverable. This was the second surprising finding in the last couple of years, the other being an atypical lymphatic system in the brain as I think was discussed earlier here. Even with regard to gross anatomy we are still learning about the brain.

Its worth also looking at African Sleeping Sickness, which is from a parasite that produces large quantities of PGD2 and induces deep sleep.

 

[TrixieStix]

i am the first to post in this section, that’s precious...

Am I the only one who has this weird thing going on with their sleep ? If I sleep many hours at night, like 7 or 8, sometimes I have to take 1-2 naps, even 3 during the day. I can’t stay awake.

On the contrary, like today and tomorrow probably (I don’t feel tired and it’s 00:25 and I haven’t napped), when I only sleep 4-5 hours at night, I can’t sleep at all during the day. I just don’t feel tired.

So there seems to be no middle : either I sleep a lot, or I don’t sleep much at all. And i feel tired when I sleep a lot, and not tired when I don’t sleep much. Go figure...

Anyone else ?

your patterns don't sound as severe as the sleep disorder "N24" (non 24) but it might be worth reading about it just in case you see a worsening in your sleep patterns you described. I have a friend and a cousin who suffer from N24.

 

[Dechi]

your patterns don't sound as severe as the sleep disorder "N24" (non 24) but it might be worth reading about it just in case you see a worsening in your sleep patterns you described. I have a friend and a cousin who suffer from N24.

Thanks a lot ! I have been reading about that a little bit lately but didn’t realize it was actually a sleep disorder. I will definitely read about it !

 

[TrixieStix]

Thanks a lot ! I have been reading about that a little bit lately but didn’t realize it was actually a sleep disorder. I will definitely read about it !

FYI.... I too disagree with someone's comment that N24 is "just when DSPS gets too bad".

For some people with N24 it's not only that the time they fall asleep is constantly moving forward, but also that the length of their sleep cycle varies from day to day. For example the 2 loved ones of mine who have it will sleep for 3 days straight then be awake for 3 days straight, and this dramatic circadian disruption just stays in constant crazy flux and is horribly disabling and keeps them from being able to live any kind of "normal" life. To an outsider it probably looks like a mental illness. As poor as my quality of life is I would not trade it for that of someone with N24. (I am diagnosed with DSPD btw)

 

[Dechi]

@TrixieStix What is DSPD ?

I am sorry about your loved ones, N24 sounds awful... :-(

 

[TrixieStix]

@TrixieStix What is DSPD ?

I am sorry about your loved ones, N24 sounds awful... :-(

What is Delayed Sleep Phase Disorder?

Delayed Sleep Phase Disorder (DSPD), also known as Delayed Sleep Phase Syndrome (DSPS).

Does it have other names?

The official designation according to the current International Classification of Sleep Disorders (ICSD-3, published in 2014) is Delayed Sleep-Wake Phase Disorder. The previous edition (ICSD-2, 2005) called it Circadian Rhythm Sleep Disorder - Delayed Sleep Phase Type. The version before that (ICSD-R, 1997) used the name Delayed Sleep Phase Syndrome, and that has been widely used in the medical literature and in many popular articles and web sites. Delayed Sleep Phase Disorder is now also commonly used, and we use it here. The DSM-5 (2013) refers to it as Circadian Rhythm Sleep-Wake Disorder - Delayed Sleep Phase Type.

 

[Dechi]

What is Delayed Sleep Phase Disorder?

Delayed Sleep Phase Disorder (DSPD), also known as Delayed Sleep Phase Syndrome (DSPS).

Does it have other names?

The official designation according to the current International Classification of Sleep Disorders (ICSD-3, published in 2014) is Delayed Sleep-Wake Phase Disorder. The previous edition (ICSD-2, 2005) called it Circadian Rhythm Sleep Disorder - Delayed Sleep Phase Type. The version before that (ICSD-R, 1997) used the name Delayed Sleep Phase Syndrome, and that has been widely used in the medical literature and in many popular articles and web sites. Delayed Sleep Phase Disorder is now also commonly used, and we use it here. The DSM-5 (2013) refers to it as Circadian Rhythm Sleep-Wake Disorder - Delayed Sleep Phase Type.

Thank you ! Can a polysomnography test detect DSPD or N24 ? If not, what could ?

 

[TrixieStix]

Thank you ! Can a polysomnography test detect DSPD or N24 ? If not, what could ?

In regards to Non-24... Polysomnography is not required for the diagnosis of non-24 per se, as it is the timing rather than the quality of sleep that is primarily impaired (although some patients may show alpha intrusions and reduced delta sleep).

It is mainly of use in differentiating non-24 from other disorders causing excessive daytime sleepiness such as narcolepsy, idiopathic hyperso
mnia, or sleep apnea. These disorders also may be comorbid with non-24.

Most patients with non-24 go undiagnosed for years, and misdiagnosis, particularly of psychiatric disorders, is common.

http://www.sleepreviewmag.com/2015/05/need-know-non-24/

 

[TrixieStix]

Thank you ! Can a polysomnography test detect DSPD or N24 ? If not, what could ?

In regards to DSPD/DSPS...

DSPS is diagnosed based solely on a description of the symptoms and sleep logs. Sometimes a non-invasive wrist-watch-like device called an autograph may be used to confirm rest-activity rhythms. An overnight sleep study (polysomnogram) may be recommended to rule out the presence of any other sleep disorders if the history is suggestive. Sophisticated tests of melatonin or core temperature rhythms are generally reserved for research purposes.

 

[Kalph]

I've had a delayed sleep schedule since I was in my teens. Never had a diagnosis but I'm pretty confident it was DSPS. I used a combo of a powerful stimulant in the morning (caffeine + Adderall) and powerful sedative at night (mirtazapine, quetiapine, benzo, countless others, but mirtazapine is one of the strongest drugs I have ever taken, for anything, and I have taken from every class of psychotropic drug) to keep myself functioning according to social standards (primarily school at that age).

I figure that because my sleep schedule was aligned to a different time I wasn't actually getting any quality sleep in my drug-induced sleep states. Now I am finding it is possible sometimes to force sleep with drugs BUT if the sleep does not line up with where your circadian rhythm is it is very non-restorative. Things keep getting odder though.

Eventually after several crashes it was no longer possible to take stimulants without getting immediately sick. I reverted to around 5 am bedtime. At that point it was regular DPSP. I was, 20, maybe? I am 26 now.

(Trust me I know stimulants are bad. If I could take back the years of stimulant use and abuse I would do it because they were responsibility for some of the worst crashes that I never fully recovered from, and I'm pretty sure they hastened the course of my illness. I might even have recovered like some young people afflicted with ME do, but I clobbered any chance of recovery with drugs to push myself to try and complete school.)

Now in the last 2-3 years it has transformed into non-24. And very recently it has gone completely off the rails and doesn't seem like a schedule at all (random naps, exhaustion sleeps, sleep from sedatives [wired-but-tired but forced to sleep sleep], all different qualities and at no set time).

Currently I am decoupling all sleep from mirtazapine as the absurd half-life on this drug ensures you are "locked" in bed in an extremely uncomfortable mental state. This happens if you take it and it doesn't put you to sleep, which happened to me after years of use.

As it stands it appears all efforts to correct sleep schedule backfire. For example I have tried many times to "push forward". I do this because trying to go to bed earlier to fit a normal rhythm, never, ever, works. All the sleep hygiene stuff (with the exception of light, which I found to be true) is baby stuff and doesn't work. What I have tried instead is to push forward, like chronotherapy. This doesn't seem to work either though. I will stay in the correct schedule for 1, maybe 2 days, but it's gone by the 3rd. My body strongly rejects the "corrected" schedule and moves forward until it reaches some absurd but slightly later date every day (like non-24). This can lead to weird things like double sleeps, or no sleep at all for 24 or more hours. All in all manipulating my schedule has been a complete disaster.

Now I think it is going to that stage past non-24 where there isn't actually a rhythm at all. If I understand correctly in non-24 you still have a rhythm, it just pushes forward by some number of minutes every day. I feel like now there is no rhythm.

Honestly no idea what to do.

It messes with how I feel about myself the most. And it shapes other people's perceptions about me.

If I had to give some advice it would be that forcing sleep with drugs could backfire in the long run. It did for me but hey we are all individual chemistry.

 

[Dechi]

Update : I have found 4 meds/supplements that help me sleep. I now rarely wake up and when I do, I can fall back asleep. This is helping me have an easier life with less symptoms.

I alternate between melatonin 3mg, benadryl 25 mg and sublinox 2,5 mg. I also have zopiclone to replace sublinox once in a while so I don’t get dependent on either. I don’t try to sleep without those anymore. I’ve been told benadryl in the long run could impact long term memory, even if taken every three days, so I will eventually replace it with something more natural. I just don’t know what yet.

It took me more almost 3 years to find something that worked. So don’t give up, there is hope.

 

[Josie]

Update : I have found 4 meds/supplements that help me sleep. I now rarely wake up and when I do, I can fall back asleep. This is helping me have an easier life with less symptoms.

I alternate between melatonin 3mg, benadryl 25 mg and sublinox 2,5 mg. I also have zopiclone to replace sublinox once in a while so I don’t get dependent on either. I don’t try to sleep without those anymore. I’ve been told benadryl in the long run could impact long term memory, even if taken every three days, so I will eventually replace it with something more natural. I just don’t know what yet.

It took me more almost 3 years to find something that worked. So don’t give up, there is hope.

Dechi, so has your sleep hangover also improved with these medications?
Because I have the exact same symptoms going on as you. Sleeping not enough and being wired after 4-5 h of sleep, unable to nap during the day. Or sleeping too much and feeling drugged, brain fogged and so exhausted/tired all day long, like not waking up. I alternate between these 2 states!

 

[Dechi]

Dechi, so has your sleep hangover also improved with these medications?
Because I have the exact same symptoms going on as you. Sleeping not enough and being wired after 4-5 h of sleep, unable to nap during the day. Or sleeping too much and feeling drugged, brain fogged and so exhausted/tired all day long, like not waking up. I alternate between these 2 states!

Yes, yes, yes ! It’s been about 6-8 weeks now and I have been sleeping through the night most of the time, with a little insomnia left. I usually sleep from 0000 to 0700 or so, more or less.

I have to admit though that all the majors stressors in my life have gone away, my depression has lifted and my anxiety is a lot more under control too. I pretty much have the ideal combo going on. I am hoping it will help my symptoms in the long run, but it’s too early to tell.

 

[Josie]

Yes, yes, yes ! It’s been about 6-8 weeks now and I have been sleeping through the night most of the time, with a little insomnia left. I usually sleep from 0000 to 0700 or so, more or less.

I have to admit though that all the majors stressors in my life have gone away, my depression has lifted and my anxiety is a lot more under control too. I pretty much have the ideal combo going on. I am hoping it will help my symptoms in the long run, but it’s too early to tell.

Interesting! I cannot tolerate Benadryl and the Melatonin does nothing but give me a bad overhang. I like the zopiclone too, but its addictive, so I only take it once a week.
What do you think did the trick for you? Eliminating the stressors or the medication or probably the combo?
I dont have any conscious life stressors at the moment, so I dont know what to eliminate. The illness itself causes so much stress :-(

 

[Dechi]

Interesting! I cannot tolerate Benadryl and the Melatonin does nothing but give me a bad overhang. I like the zopiclone too, but its addictive, so I only take it once a week.
What do you think did the trick for you? Eliminating the stressors or the medication or probably the combo?
I dont have any conscious life stressors at the moment, so I dont know what to eliminate. The illness itself causes so much stress :-(

The medication helped the most because it started working when some major stressors were still going on. I had been working on my sleep hygiene for 12 months also, and that made a difference. It took about six months to start working, and it helped me with my sleep but the insomnia didn’t go away. It only went away when I found the right medication combo.

Since life will always bring new stressors, you can’t get rid of them completely. My best advice is to put your effort into finding whatever med combo works for you and stick with it. And work on your sleep hygiene, it’s a must.

I take zopiclone and sublinox in alternance, so as not to develop an addiction to either of them. I also take the smallest dosage, that I divide in half, so it’s a very small dose.