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Xyrem... Taking A Night Off?


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#1 Lais02

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Posted 29 June 2009 - 08:12 PM

This past weekend I took 2 nights off of my Xyrem, Thursday and Saturday. I feel like I can't catch up on my sleep again. Taking 1 night off does make the next day bad, but then the day after that I'm fine. Today was Monday, and I was falling asleep at my desk, I had C while laughing with my coworkers (C is rare for me but I don't think anyone noticed... just my face), micro sleeps, and my drive home was not a good idea. This all happened even though I had coffee, tea, and twice the amount of dex I ever take in a day. (I usually don't take dex... its a just in case thing for me). I sure forget quickly what N feels like without meds, and I don't miss it.

Does this happen to other people? How long does it take to get back to the way you normally feel on your Xyrem?

#2 Mike M

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Posted 02 July 2009 - 04:00 PM

Does this happen to other people? How long does it take to get back to the way you normally feel on your Xyrem?


I don't know if I have every had two full nights off of my Xyrem, but I have had similar experiences. The one time that I completely skipped Xyrem (it was just last Thursday night), I functioned decently the next day (but I was teaching all day). But, I felt completely off through Monday at least. I too would describe it as feeling like I had to catch up on sleep. The other experiences that I have had is when I have had multiple nights of only a single dose. Every two months or so, I hit a string of days when I sleep through my second dose time. Because I have to be somewhere at a certain time, I then forgo that dose. Usually, one night with a single dose is manageable, but two or more nights (I think I had four nights in a row once) messes me up for at least three or four days. As you described, Lais02, I seem to experience my narcolepsy more fully and have much stronger EDS. I hope you get back on track in the next day or so. Cheers!

#3 Jesse

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Posted 06 July 2009 - 03:17 PM

I've now taken three straight nights off of my Xyrem. I was very glad to see this topic here because I came here for the express purpose of hoping to discuss this very thing with someone else. More details about the last few days below - first a little introductory info...

I was diagnosed with N in 2003. Most of the time I've been on methylphenidate, most recently taking 90-100mg per day to function, with numerous very-sleepy times throughout the day, in spite of the meds I was taking. The only N symptom I've ever had is EDS. Always slept very soundly through the night, never had trouble getting to sleep, rarely woke up in the middle of the night, etc. Official diagnostic criteria actually has me more closely aligned with idiopathic hypersomnia than narcolepsy, but my official diagnosis is narcolepsy, so who knows. Anyway, a couple of months ago I talked to my doc about my meds because the methylphenidate was continuing to decrease in its effectiveness. He suggested I try Xyrem. I thought it was mainly for helping with cataplexy and was extremely skeptical that it would help me, but I agreed to give it a try. It started working wonders after about a week. I was able to start decreasing my dosage of methylphenidate during the day, and eventually got to the point where I rarely had to take it at all.

I am nearing the bottom of my last bottle of Xyrem and can't currently afford to order another shipment, so I decided to take a few nights off to see how I would do the next day - I was curious if my EDS would revert back to its old ways immediately, or if it would take a few days. Thursday night last week was the light night I took my Xyrem - and only a single dose. (Many nights I only take a single dose.) Friday I had to take a small amount of methylphenidate to get me through the day. Saturday and Sunday I was sleepier than usual at times, but nowhere near bad enough to make me want to take my stimulant meds. Today at work I've definitely been noticeably drowsier than normal, but still nowhere near what it used to be before I started taking Xyrem.

I'm considering taking Xyrem again tonight, but I haven't decided for sure yet. I'm honestly quite surprised that after 3 nights of not taking it I'm still a far cry from being anywhere near as sleepy as I used to be. It doesn't really make any sense to me! It sounds like my experience is very different from both of yours...

#4 Mike M

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Posted 06 July 2009 - 09:18 PM

The one thing that never surprises me these days is that our meds have radically different effects on all of us. I hope some others will post too, Jesse, just so you can get an even wider range of experiences. I would guess that a few things are happening. One, Xyrem clearly has allowed you to experience a far more restful sleep than you had been getting for years. As a result, it could be that you can now function better even when you get the poorer sleep that you had before the Xyrem. Two, when I have taken medication holiday from my amphetamine, I am a zombie for a few days, but then can function decently on a much smaller dose. Since you were able to stay away from your methylphenidate for a long period of time, it is likely that it is have a much more pronounced effect on your body. I encourage you to do your best to track your experiences each day so you have a good understanding of how you can use your Xyrem most effectively, particularly if you are paying out of pocket for it (or have a high prescription co-pay). I would also offer that you should probably discuss this with your doctor unless you think he will object to your "experimenting." I hope my additional comments help. Just one more thought, I definitely would be unable to function without my stimulant even when I do take both of my Xyrem doses. So, Xyrem is likely a better drug for you. I also think that it is cool that you clearly do not have any tolerance issues with Xyrem (I don't seem to either). Good luck!

#5 Jesse

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Posted 07 July 2009 - 04:25 PM

The one thing that never surprises me these days is that our meds have radically different effects on all of us. I hope some others will post too, Jesse, just so you can get an even wider range of experiences. I would guess that a few things are happening. One, Xyrem clearly has allowed you to experience a far more restful sleep than you had been getting for years. As a result, it could be that you can now function better even when you get the poorer sleep that you had before the Xyrem. Two, when I have taken medication holiday from my amphetamine, I am a zombie for a few days, but then can function decently on a much smaller dose. Since you were able to stay away from your methylphenidate for a long period of time, it is likely that it is have a much more pronounced effect on your body. I encourage you to do your best to track your experiences each day so you have a good understanding of how you can use your Xyrem most effectively, particularly if you are paying out of pocket for it (or have a high prescription co-pay). I would also offer that you should probably discuss this with your doctor unless you think he will object to your "experimenting." I hope my additional comments help. Just one more thought, I definitely would be unable to function without my stimulant even when I do take both of my Xyrem doses. So, Xyrem is likely a better drug for you. I also think that it is cool that you clearly do not have any tolerance issues with Xyrem (I don't seem to either). Good luck!


Today was my fourth day off of Xyrem. I have made it through the day so far (5:15pm) without taking any of my stimulants. It has me thoroughly baffled - but in a good way. I was noticeably drowsy on a few occasions throughout the day, and I considered taking some stimulants a couple of times, but I never did. And because I only got about six hours of sleep last night, I don't know if the drowsiness was due to the lack of Xyrem or the lack of a proper amount of sleep. I'm hoping I can get to bed early enough to get eight hours of sleep tonight.

Before I started taking Xyrem, making it through an entire day at work without stimulants and without falling asleep a single time was unthinkable. I'd take 90-100mg of methylphenidate and still doze off multiple times during the day. I don't understand why my body is reacting this way to the Xyrem "withdrawal," but so far I have to say I'm quite pleased with the results. I keep expecting my EDS to overtake me again - maybe tomorrow it will. We shall see!

Oh, and yes, when I was taking my stimulants, going off them for a few days would increase their effectiveness once I resumed taking them, just like you mentioned. So if I was taking my stimulants during this Xyrem-free time period, that would definitely make sense. But I haven't even taken them! :) The last time I took any of my methylphenidate was last Friday - and I took my Xyrem Thursday night. This is all rather strange to me!

#6 ulooktired

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Posted 07 July 2009 - 10:38 PM

This past weekend I took 2 nights off of my Xyrem, Thursday and Saturday. I feel like I can't catch up on my sleep again. Taking 1 night off does make the next day bad, but then the day after that I'm fine. Today was Monday, and I was falling asleep at my desk, I had C while laughing with my coworkers (C is rare for me but I don't think anyone noticed... just my face), micro sleeps, and my drive home was not a good idea. This all happened even though I had coffee, tea, and twice the amount of dex I ever take in a day. (I usually don't take dex... its a just in case thing for me). I sure forget quickly what N feels like without meds, and I don't miss it.

Does this happen to other people? How long does it take to get back to the way you normally feel on your Xyrem?


I have to take one night a week off because of work and it's very rough on me. I jones for xyrem those nights, and have what appears to be nothing but quick dreams and suddenly awaken all night over and over. The next day I feel it too, but take provigil, coffee, and just give in. The worse time is once a month for work i have to take 3 nights off, by the 3rd day I'm not able to read, understand anything on tv, and I start to feel the return of cataplexy at it's worse. The thing that helps me the most is just letting it go and not caring, eat junk food all night. To answer your question, I haven't done this but I think it might be good to take a slightly lower dose the 1st night back with xyrem, because typically I seem so out of it the next day after starting back, but then I'm back to feeling good.

#7 Mike M

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Posted 08 July 2009 - 12:19 AM

Today was my fourth day off of Xyrem.


Awesome!

The last time I took any of my methylphenidate was last Friday - and I took my Xyrem Thursday night. This is all rather strange to me!


Even more awesome!

I truly hope this continues to work for you. Please do keep us posted!

#8 ulooktired

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Posted 10 July 2009 - 05:46 PM

This past weekend I took 2 nights off of my Xyrem, Thursday and Saturday. I feel like I can't catch up on my sleep again. Taking 1 night off does make the next day bad, but then the day after that I'm fine. Today was Monday, and I was falling asleep at my desk, I had C while laughing with my coworkers (C is rare for me but I don't think anyone noticed... just my face), micro sleeps, and my drive home was not a good idea. This all happened even though I had coffee, tea, and twice the amount of dex I ever take in a day. (I usually don't take dex... its a just in case thing for me). I sure forget quickly what N feels like without meds, and I don't miss it.

Does this happen to other people? How long does it take to get back to the way you normally feel on your Xyrem?


I needed to respond again because this is my 3rd day with xyrem after being on call and not taking for 3 nights and I am having a rough time. Right after I wrote other reply I crashed hard and this whole week has been hard even with xyrem. I can tell that I'm getting restored slowly but unfortunately I'm on call tonight too, but not again for a week, thank God.

#9 Mike M

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Posted 10 July 2009 - 07:43 PM

Right after I wrote other reply I crashed hard and this whole week has been hard even with xyrem. I can tell that I'm getting restored slowly but unfortunately I'm on call tonight too, but not again for a week, thank God.


Massive bummer! I sincerely hope that you can get back into a groove - both with sleep and with Xyrem. Hang in there!

#10 ulooktired

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Posted 13 July 2009 - 07:48 AM

Massive bummer! I sincerely hope that you can get back into a groove - both with sleep and with Xyrem. Hang in there!


Thanks Mike, I am very sleepy this morning, but I think I'm going to be okay today. Yesterday was a good day too.

#11 Mike M

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Posted 14 July 2009 - 09:31 PM

I am very sleepy this morning, but I think I'm going to be okay today. Yesterday was a good day too.


Excellent! Do hang in there!