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#1 xyrem2011

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Posted 26 April 2012 - 02:45 PM

I am currently up to 3.25 g of Xyrem twice a night with 0.5 mg of Klonopin. I sleep for about 1.5 hours on my first dose and about 2-2.5 on second. Has anyone else had this problem?

#2 Delta

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Posted 28 April 2012 - 04:36 PM

That's about how I slept on 3.25 x 2. It got better when I got up to 4.5 x 2.

#3 Hank

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Posted 23 May 2013 - 09:33 AM

I am currently up to 3.25 g of Xyrem twice a night with 0.5 mg of Klonopin. I sleep for about 1.5 hours on my first dose and about 2-2.5 on second. Has anyone else had this problem?


Be careful. Both medications are respiratory suppressants. This is a dangerous interaction. They should not be used together. .

#4 DeathRabbit

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Posted 23 May 2013 - 02:12 PM

I am currently up to 3.25 g of Xyrem twice a night with 0.5 mg of Klonopin. I sleep for about 1.5 hours on my first dose and about 2-2.5 on second. Has anyone else had this problem?

Wow, I missed this post. Yeah, ditch the klonopin or Xyrem. Taking both of those makes you more likely to take a dirt nap instead of a normal one.



#5 ApparentlyNarcoleptic

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Posted 26 June 2013 - 01:43 PM

I've been on 3.75 for four nights now and for 3 of them I've missed my second dose.  Twice I realized that it was because I'm an idiot and while I SET the alarms I neglected to actually turn them ON, and when I woke on my own it was too late to take the second dose.  Last night I just didn't wake up to the alarm - and it appeared to have vibrated off my night stand and a short distance across the floor.  When I don't take the second dose I feel quite crummy for the remainder of the day.  Has anyone else had a problem like this?



#6 Brennan

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Posted 27 June 2013 - 06:18 AM

I am currently taking 4.5G of Xyrem x2 per night along with 5mg of Ambien (due to the fact that I had/have the same problem).  I've been on the Xyrem about 8 months now, and the Ambien with it - about 4.  I'm lucky if for each dose of Xyrem I sleep 2 hours (even with Ambien).  In order to time my sleeping regimen so that I don't wake up before 5am - I have to force myself to stay up each night till midnight.  Even then sometimes I'm up long before the chickens.  

 

Without the Xyrem I sleep 9-10 hours straight - but really have always been an extremely light sleeper.  A pin drop will wake me up, literally.  More bad news is even with the Xyrem and Ambien my EDS still gets to me...though it is about 20% less than when I take no medication at all.  For me being 20% less drowsy is pretty epic...

 

Right now as I write this it is 4am.  I made the mistake of going to bed last night at 10pm because I was exhausted.

 

On a previous post I had made about the same issue - I believe someone had mentioned that they needed to eat a little closer to the first dose of Xyrem than 4+ hours.   They had said that being on a completely empty stomach the medicine processed through your system too fast.  I've tried this but haven't had much luck.  I guess trying to find that perfect combination of what "works" can be hell, at least for me. 

 

Sometimes I don't know what's worse, laying in bed awake...waiting hours till I can get up and make coffee - Or being 20% more drowsy throughout the day.   Sigh.

 

I wouldn't worry too much though, you are still on a lower dose.  I've also heard people say Xyrem can be hell for a long time until it "levels out".  Perhaps try adjusting when and what you eat before bedtime.  That may help



#7 ApparentlyNarcoleptic

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Posted 27 June 2013 - 12:22 PM

I double checked my alarm to make sure it wasn't the batteries or anything before setting up last night.  I don't know if it was actually the alarm or the fact that I was so paranoid about missing it again, but I DID wake for my second dose last night (but also took longer to fall asleep on the first for some reason - it's usually btwn 20-45min, but last night I was up for over an hour).  I also had a little trouble going back to sleep, which has never happened before.  I still slept through all of my regular morning alarms and barely woke up in time for work.  When I found out that work was cancelling today's session I went back to sleep.  I started my xyrem at 11:30pm, took my second dose around 2:30 am, and didn't actually get up and out of bed until noon.  This happens a lot, I just keep sleeping - even before knowing I have N and starting meds.  Though with the xyrem my EDS is slightly better than without.  I don't have any daytime meds yet - we tried nuvigil but I did not react well.

 

I'm sorry you are still suffering and haven't found the right "cocktail" of meds.  I've read that some people try eating a few crackers before orafter their first X dose and it seems to help.  I've experimented with what I eat and how close to my first dose.  So far, as long as I don't eat anything really heavy it doesn't seem to make much of a difference.  Have you tried the cracker thing?  Maybe it would help make the X last longer in your system so you wouldn't need the ambien?  I'm sure you already know this, but be VERY careful with the two sleep meds together and make sure your doctor it on top of it!  

 

In the past I've used guided meditation cds, breathing/relaxation exercises, sound machines, and for a long time I would fall asleep with a movie on (but the screen hidden so there was no extra light and I could just listen - making sure it was something I'd seen too many times so I wouldn't be tempted to stay awake for it).  Maybe something else might help you fall asleep when you're stuck awake?



#8 Hank

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Posted 27 June 2013 - 02:26 PM

I am currently taking 4.5G of Xyrem x2 per night along with 5mg of Ambien (due to the fact that I had/have the same problem).  I've been on the Xyrem about 8 months now, and the Ambien with it - about 4.  I'm lucky if for each dose of Xyrem I sleep 2 hours (even with Ambien).  In order to time my sleeping regimen so that I don't wake up before 5am - I have to force myself to stay up each night till midnight.  Even then sometimes I'm up long before the chickens.  
 
Without the Xyrem I sleep 9-10 hours straight - but really have always been an extremely light sleeper.  A pin drop will wake me up, literally.  More bad news is even with the Xyrem and Ambien my EDS still gets to me...though it is about 20% less than when I take no medication at all.  For me being 20% less drowsy is pretty epic...
 
Right now as I write this it is 4am.  I made the mistake of going to bed last night at 10pm because I was exhausted.
 
On a previous post I had made about the same issue - I believe someone had mentioned that they needed to eat a little closer to the first dose of Xyrem than 4+ hours.   They had said that being on a completely empty stomach the medicine processed through your system too fast.  I've tried this but haven't had much luck.  I guess trying to find that perfect combination of what "works" can be hell, at least for me. 
 
Sometimes I don't know what's worse, laying in bed awake...waiting hours till I can get up and make coffee - Or being 20% more drowsy throughout the day.   Sigh.
 
I wouldn't worry too much though, you are still on a lower dose.  I've also heard people say Xyrem can be hell for a long time until it "levels out".  Perhaps try adjusting when and what you eat before bedtime.  That may help


Stick with it. As you adjust to each dose your experience should improve. I had previously tried Ambien and Sonata and they were like pez. After discontinuing Xyrem in January, I have been on Trazadone (an antidepressant used for sleep) and I sleep soundly. Definitely ask your doctor for options. CNS depressants are best avoided with Xyrem.

As much as you can, take Xyrem and put your head on the pillow. Don't wait to fall asleep while reading or watching tv. Consider using an eye mask and a white noice machine. I found that I was especially sensitive to light and sound on xyrem.

One of the tricky things with N, which was an issue for me on Xyrem, is that I do not always know when I am asleep. I may have dreams that I cannot fall asleep. I may have dreams that I am awake. My sense of time when awake at night seems to be exaggerated. It is a real mind game. I have been training myself to not believe a word I say to myself when I am sleeping- yikes.

I find that repeating a phrase that does not require thought helps me to fall asleep. I say the first line of the Lord's Prayer over and over. It keeps me from thinking other thoughts and trains me to clear my mind. You will find what works for you- just keep it relaxing and predictable. Some early evening exercise can help.

Regarding food- no food 2 hours before Xyrem seems to be the rule. After high fat meals or pizza consider 3 hours. 4 hours is a bit much. I have heard of people eating a craker to help with nausea but any food before or after will reduce the effectiveness of xyrem. Make sure you keep up your calories in a way that works for you during the day.

One trick that works for us is temperature. There are actually studies to demonstrate this. Drink a glass of ice water and then warm your feet. I have used a microwaved neck wrap on my feet. This contrast in temperatures induces sleep in people with narcolepsy. Try the opposite in the morning- cold feel and a hot drink to wake you up. Surprisingly, it really does work for me.

I was likely to wake up after each sleep cycle- about every 60-90 minutes. Try to ride it out and let yourself fall back asleep when this happens. Your body needs to adjust to getting high quality sleep.

Xyrem does have a sedating front end and a stimulating back end. These are more pronounced on the initial lower doses. The sedating part is not quite enough to keep you asleep or get you asleep. Then the stimulating part makes you feel wide awake as it wears off. As you increase the dose and adjust, this should minimize.