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I Can Sleep With Xyrem, But Can't Stay Awake All Day


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#1 cloudtalk

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Posted 28 September 2012 - 04:54 AM

Has anyone else noticed this? I sleep for about 6 hours on xyrem. I tried raising my dose slightly and felt severely depressed the next day. So with the dose I am at (3.75/3.25) I feel pretty well rested in the morning. But after being awake for about 6 hrs I start to feel extremely anxious, have trouble thinking/processing things, and I start to feel physically like I'm getting sick. I lose my voice and start to feel congested and generally unwell. The only thing I can do to feel better is take a nap, and then I feel better for a few hours, then the whole thing repeats. With narcolepsy am I just unable to be awake for longer than 6 hrs at a time? Has anyone else experienced something like this? It has been causing problems for me at work and school when I have to be there for more than 6 hrs.

#2 Megssosleepy

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Posted 28 September 2012 - 08:01 AM

Has anyone else noticed this? I sleep for about 6 hours on xyrem. I tried raising my dose slightly and felt severely depressed the next day. So with the dose I am at (3.75/3.25) I feel pretty well rested in the morning. But after being awake for about 6 hrs I start to feel extremely anxious, have trouble thinking/processing things, and I start to feel physically like I'm getting sick. I lose my voice and start to feel congested and generally unwell. The only thing I can do to feel better is take a nap, and then I feel better for a few hours, then the whole thing repeats. With narcolepsy am I just unable to be awake for longer than 6 hrs at a time? Has anyone else experienced something like this? It has been causing problems for me at work and school when I have to be for a more than 6 hrs.


I am having some of the same troubles. I just upped back to 3.75/3.75 I only sleep 2.5/3 hours on each dose. I am awake at 3:30/4:00 am most mornings :angry: . The strange thing is even what seems like so little sleep I am more awake then the other day when I skipped my Xyrem took another sleep aid slept 8+ hours. I cannot however say that my EDS is any better then before.
Okay so for me around 4:00-5:30pm I tend to feel sick to my stomach... feels like car sickness almost? Thinking/processing things tend to be tricky during the evenings, and I cant take a nap on week day :huh: so I dont know if that would help me or not. Yesterday I tried taking my stimulant sooner and that seemed to help, but then I had to take the 3rd dose that I try to avoid.
As far as feeling like you have a cold, that is one of the side effects listed. I find my throat becomes a little sore and I have a tiny tickle, but no other cold like feelings.
Not sure if this helps, since I have no clue how to fix the problem... -_-

#3 Hank

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Posted 28 September 2012 - 08:44 AM

Wednesday night I must have turned off my pillow alarm at 1:15 and did not take dose 2 of Xyrem until 3:45 am. It threw me off my very regular schedule. I always take Adderall XR 30 mg first thing- before I brush my teeth. I forgot to take it. I was not sleepy yesterday, I was just not sharp- and my job requires sharp.


I felt like I had stayed on 3.75g x 2 for too long. I got an appt with my sleep doc last week and went up to 4.5g x 2. That made a world of difference. Last night I made it a little harder to turn off the pillow alarm. I have to say, for me, moving up the Xyrem dose was the right call. There is still room for improvement and I need to get accustomed to this dose. Honestly, if this is the best I will ever be, I am thrilled.

#4 bluesbrother20

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Posted 28 September 2012 - 10:39 AM

I am having some of the same troubles. I just upped back to 3.75/3.75 I only sleep 2.5/3 hours on each dose. I am awake at 3:30/4:00 am most mornings :angry: . The strange thing is even what seems like so little sleep I am more awake then the other day when I skipped my Xyrem took another sleep aid slept 8+ hours. I cannot however say that my EDS is any better then before.
Okay so for me around 4:00-5:30pm I tend to feel sick to my stomach... feels like car sickness almost? Thinking/processing things tend to be tricky during the evenings, and I cant take a nap on week day :huh: so I dont know if that would help me or not. Yesterday I tried taking my stimulant sooner and that seemed to help, but then I had to take the 3rd dose that I try to avoid.
As far as feeling like you have a cold, that is one of the side effects listed. I find my throat becomes a little sore and I have a tiny tickle, but no other cold like feelings.
Not sure if this helps, since I have no clue how to fix the problem... -_-

Hello my good friend megs, and no its not strange that you feel more awake after taking xyrem only once as compared to twice. I have had that on multiple times and will explain to you the reason why. So for me everytime I was able to get only one dose in I felt great no hang over effect less head aches and everytime I take the dose twice i wake up with hangovers and not feeling so great. Our bodies get used to the xyrem at times and that's why one night you might only get 2 hrs of sleep on a dose like I did last night. I took my first dose at 11:45 and was up by 2 oclock and felt good but then I took 3.75 for the next dose and slept longer but worse because I got good deep sleep but then I was awake even though I didnt really know it and had disrupted up waking up on and off till 6 am. We are getting enough deep sleep but we aren't getting enough REM sleep if any. Last night I got 2hrs and 21 min of deep sleep and zero REM sleep, light sleep 1hr and 51 min and was awake 1hr and 24 min during the night. "REM sleep contributes to psychological rest and long-term emotional well-being. It may also bolster memory." REM has been shown to have links to memory consolidation and to learning. People who are deprived of REM sleep through sleep deprivation might have problems remembering. They also might have trouble learning new things.

So going back to the part about 1 dose feeling more effective is because you got good deep sleep without multiple interruptions of waking up and you feel awake is because thats what the xyrem medicine makes you feel when the does starts losing its effectiveness and only 1 gram is in you it has the effect to keep you awake. Thats why its abused for many reasons ppl take xyrem on 1 gram or however we measure it at night to be more social and feel good about themselves if they have like a shy personality but once you add 2.25 it starts to work the opposite and helps put you too sleep.

#5 Megssosleepy

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Posted 28 September 2012 - 01:05 PM

Hello my good friend megs, and no its not strange that you feel more awake after taking xyrem only once as compared to twice. I have had that on multiple times and will explain to you the reason why. So for me everytime I was able to get only one dose in I felt great no hang over effect less head aches and everytime I take the dose twice i wake up with hangovers and not feeling so great. Our bodies get used to the xyrem at times and that's why one night you might only get 2 hrs of sleep on a dose like I did last night. I took my first dose at 11:45 and was up by 2 oclock and felt good but then I took 3.75 for the next dose and slept longer but worse because I got good deep sleep but then I was awake even though I didnt really know it and had disrupted up waking up on and off till 6 am. We are getting enough deep sleep but we aren't getting enough REM sleep if any. Last night I got 2hrs and 21 min of deep sleep and zero REM sleep, light sleep 1hr and 51 min and was awake 1hr and 24 min during the night. "REM sleep contributes to psychological rest and long-term emotional well-being. It may also bolster memory." REM has been shown to have links to memory consolidation and to learning. People who are deprived of REM sleep through sleep deprivation might have problems remembering. They also might have trouble learning new things.

So going back to the part about 1 dose feeling more effective is because you got good deep sleep without multiple interruptions of waking up and you feel awake is because thats what the xyrem medicine makes you feel when the does starts losing its effectiveness and only 1 gram is in you it has the effect to keep you awake. Thats why its abused for many reasons ppl take xyrem on 1 gram or however we measure it at night to be more social and feel good about themselves if they have like a shy personality but once you add 2.25 it starts to work the opposite and helps put you too sleep.


Very interesting. I think I may take some time to do some research on the affects of deep sleep. I was speaking to a friend about never having had night sweats and now I get them terribly. He said that night sweats have something to do with being in deep sleep. I do find the nights that I dream more I feel better the next day. Last night even though I would of liked to sleep longer I did dream so I dont feel to crappy. I am thinking I may keep a small dose maybe 2.5 or even 2 in a 3rd bottle for mornings that I wake at 3:00am and just lay there. I find I wake at exactly the same time (1:15) from the first dose even if its 3 or 3.75 also last night I took it 15mins later then normal and still woke at 1:15... I wonder if my body has adjusted to the wrong time? Maybe I have been on the lower doses to long? Guess its all trial and error!

#6 Megssosleepy

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Posted 28 September 2012 - 02:47 PM

While reading the links that Hank posted I found this tidbit...

It is unclear how increase in alertness occurs because sodium
oxybate did not increase the total nocturnal sleep time. Thus,
improvements in daytime sleepiness may be related to sleep
intensity, generally considered a reflection of slow-wave sleep.21
For example, compensation for sleep loss following sleep deprivation is mediated by an increase in slow-wave sleep to a much
greater extent than by an increase in sleep duration.21
Similarly,
the increase in slow-wave activity induced by sodium oxybate
may elicit the restorative effects of this sleep-intensity mechanism. Although it remains to be demonstrated that the high-voltage slow waves produced by sodium oxybate are similar in
nature to the slow delta waves of natural sleep, there is preliminary evidence that both types of slow-wave activity share important physiologic properties.

#7 DeathRabbit

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Posted 28 September 2012 - 03:32 PM

While reading the links that Hank posted I found this tidbit...

It is unclear how increase in alertness occurs because sodium
oxybate did not increase the total nocturnal sleep time. Thus,
improvements in daytime sleepiness may be related to sleep
intensity, generally considered a reflection of slow-wave sleep.21
For example, compensation for sleep loss following sleep deprivation is mediated by an increase in slow-wave sleep to a much
greater extent than by an increase in sleep duration.21
Similarly,
the increase in slow-wave activity induced by sodium oxybate
may elicit the restorative effects of this sleep-intensity mechanism. Although it remains to be demonstrated that the high-voltage slow waves produced by sodium oxybate are similar in
nature to the slow delta waves of natural sleep, there is preliminary evidence that both types of slow-wave activity share important physiologic properties.

That's how I understand it. We get way too much REM (theta) sleep at night and those pesky theta waves invade our daytime activity, making us derpy and causing cataplexies sometimes. By increasing the delta sleep, you reduce the theta influences during the day, though It's not a complete fix. Fixing the lack of recuperative sleep helps with EDS, but there is still another underlying mechanism besides sleep deprivation that causes the EDS. I would really like to see what H3 agonists could do, but those haven't even been really evaluated for therapeutic purposes, though they do seem to show nootropic effects in sleep deprived individuals. From what I understand, they aren't controlled substances, since they technically aren't drugs, so I've thought about trying to get some from a chemical distributor, but I'm not sure I wanna be that far out on the bleeding edge of treatment. Also, it could be bad if suddenly, those did start to come under the eye of the power-hungry jerks in the Gov't and I had a bunch of them, lol.

#8 The Dreamer

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Posted 17 October 2012 - 04:26 PM

Well, they say patients continue to need to use a stimulant during the day on Xyrem.

For me...my Nuvigil had pretty much stopped working by the time I started. And, it seemed to start working again afterwards...though still not as great as before....so now I'm supplement Dex with it....

But, another problem has started....I'll feel great after I wake up...that I'll forget to take my morning pills right away. Which is bad, since it takes a while to start working...it says it takes about 2 hours to reach peak plasma concentration from a fasted state. Having fed, can delay this by 2-4 hours. Taking with Dex, is said to delay the peak by 1 hour.

But, I'll go for up to 3 hours after I wake up...before I start feeling the slow down, and then remember that I hadn't taken my morning pills yet.

Which is about right for the normal 3-4 hour cycle that we apparently go through in our untreated state.

And, doc says how I sleep on Xyrem can then be affected by how awake I was during the day.....was telling him how bad my insomnia with Xyrem became during week when my Dex was out, and he had left town for a couple of weeks for a medical emergency before writing my new script.

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#9 Megssosleepy

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Posted 18 October 2012 - 11:12 AM

Well, they say patients continue to need to use a stimulant during the day on Xyrem.

For me...my Nuvigil had pretty much stopped working by the time I started. And, it seemed to start working again afterwards...though still not as great as before....so now I'm supplement Dex with it....

But, another problem has started....I'll feel great after I wake up...that I'll forget to take my morning pills right away. Which is bad, since it takes a while to start working...it says it takes about 2 hours to reach peak plasma concentration from a fasted state. Having fed, can delay this by 2-4 hours. Taking with Dex, is said to delay the peak by 1 hour.

But, I'll go for up to 3 hours after I wake up...before I start feeling the slow down, and then remember that I hadn't taken my morning pills yet.

Which is about right for the normal 3-4 hour cycle that we apparently go through in our untreated state.

And, doc says how I sleep on Xyrem can then be affected by how awake I was during the day.....was telling him how bad my insomnia with Xyrem became during week when my Dex was out, and he had left town for a couple of weeks for a medical emergency before writing my new script.

The Dreamer.


Dreamer,

I think your last comment just solved my riddle... The reason I went to my sleep study was due to the fact I could not stay asleep at night. When I first started on my stimulant I started staying asleep a bit better. Now that I am on Xyrem I have tried to cut back... like only 5mg or 10mg in the AM... Well Ive been sleeping like utter crap the past 3 nights... it seems like I may still need to wake my brain up during the day to rest well (even with Xyrem) during the night. That SUCKS! Its time for my second dose I guess... if I sleep like a champ tonight that will confirm your idea.

If only they could mix Xyrem with a sleep aid so we could get the effect of both... but I no thats a big no no... it could lead to death. I really wanted to be off the stimulants, but I think I love a full nights rest even more!

Also the comment you made about the 3/4 cycle... we have those during the day as well? This could explain why I feel fine for short periods during the day now, my mind is clearer... but then I have blocks of time my mind turns to mush! Can you explain this further? Or point me in the right direction to read about it!?

#10 Megssosleepy

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Posted 19 October 2012 - 03:05 PM

Dreamer,

I think your last comment just solved my riddle... The reason I went to my sleep study was due to the fact I could not stay asleep at night. When I first started on my stimulant I started staying asleep a bit better. Now that I am on Xyrem I have tried to cut back... like only 5mg or 10mg in the AM... Well Ive been sleeping like utter crap the past 3 nights... it seems like I may still need to wake my brain up during the day to rest well (even with Xyrem) during the night. That SUCKS! Its time for my second dose I guess... if I sleep like a champ tonight that will confirm your idea.

If only they could mix Xyrem with a sleep aid so we could get the effect of both... but I no thats a big no no... it could lead to death. I really wanted to be off the stimulants, but I think I love a full nights rest even more!

Also the comment you made about the 3/4 cycle... we have those during the day as well? This could explain why I feel fine for short periods during the day now, my mind is clearer... but then I have blocks of time my mind turns to mush! Can you explain this further? Or point me in the right direction to read about it!?


I can't say I slept like a champ, but it was better then the past few nights! I REALLY WANT SLEEP!!

#11 The Dreamer

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Posted 24 October 2012 - 12:48 PM

Also the comment you made about the 3/4 cycle... we have those during the day as well? This could explain why I feel fine for short periods during the day now, my mind is clearer... but then I have blocks of time my mind turns to mush! Can you explain this further? Or point me in the right direction to read about it!?


I forget which Dr. mentioned it at the NN Conference in 2011. But, he says when we're born we have this primal short cycle sleep wake cycle, that is gradually conditioned into the 8 hour sleep + 16 hours of wake that society demands (...that our parents impose on us).... and that parents with narcolepsy have an advantage, because without medication they can match the cycle with their baby.... He also talked about the myth of 8 hour sleep, in that it used to be two 4 hour sleeps with a wake period in between.... which was a special sacred time for many. There was a time where I would make use of my wake period in between sleeps....since I work in IT...and there's lots of things that should only be done during a maintenance window...which during the week are midnight to 6am. I would just find that I'm awake some night during the window, and then I would just do it then. Rather than worry about all the paper work to schedule the maintenance/outage. My boss does the same thing all the time too....but he's afraid to get tested. It already took long enough for them to figure out the first problem he has and its hard enough managing that....he doesn't want to know about any more problems. But, because we both have a myriad of health problems that make it hard for us to get into work by 8am (regularly), etc. is largely why I've gotten all the accommodations that I've gotten....

Hmmm, now I want to say it was Dr. Naiman that gave that session....

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