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Xyrem Schedule - Room For Extra Sleep?

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#1 sleepy21705

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Posted 29 August 2013 - 06:52 AM

Just started Xyrem this week and have had 2 nights on 2.25 mg. Everything I've read is that it can take up to a month for it to really start to work and thats it critical to stick to the schedule to get the best benefits. I've been setting my alarm for 4 hours after my first dose and have been waking up a little less than 2 1/2 hours after I take it. I know that I could take that 2nd dose after 2 1/2 hours of sleep but that would mean I'd be done with my two doses and wake up after only 5 hours of sleep and at 3am. Last night I woke up after 2 1/2 hours, went back to sleep until it had been the full 4 and then woke up 2 1/2 hours after the second dose and went back to sleep.

 

Has anyone had a similar experience? Does the "extra" sleep I'm getting, like going back to sleep after I've woken up from my 2nd dose have any impact on this process or a negative impact on establishing a schedule? I know the first reaction may be to increase the dosage.  My Rx is set to increase to 3 mg after 2 weeks but I really want to be careful about increasing my dosage and am hoping that this small dosage can work for me to limit side effects and sodium intake. Any suggestions? 

 

 

 



#2 Hank

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Posted 29 August 2013 - 08:48 AM

I think 4 hours between doses 1 and 2 is a bit long. The low dose is less predictable than the higher doses, so it should get better over time for you.

 

The highest quality sleep is after dose 2. There is nothing wrong with extra sleep. You will often wake up at the end of a sleep cycle. If you can go back to sleep- great.

 

Just remember-  you should not drive for 6 hours after dose 2.

 

Xyrem is not a sleeping pill. It does not increase the length of sleep- in just increases stages 3 and 4 sleep. (Quality not Quantity).

 

Call the Xyrem nurses- they can help explain some of this.



#3 IdiopathicHypersomniac

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Posted 29 August 2013 - 11:19 AM

Some patients take three doses.  Their doc needs to approve it though.  Problem is Jazz won't ship more than 9g, so it would have to be 3, 3, and 3 every 2.5 hours.  I'm trying to get some but it's hard.  My doc refuses to prescribe it!



#4 Hank

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Posted 29 August 2013 - 12:11 PM

2 nights on 2.25 is too soon to make a change to 3 doses per night. It is very important to titrate slowly and allow your body to adjust. The goalies depth - not duration of sleep. Xyrem is not a sleeping pill- it is an entirely different concept. Low doses are less predictable and more inconsistent than higher doses. Ride it out before looking for quick fixes. Xyrem requires a process to work- not an event.

Xyrem is not indicated for IH- that may be the reason your doc is unwilling to prescribe it for IH. I have mainly heard of 3 doses for pediatric patients who need longer sleep when side effects are an issue.

#5 IdiopathicHypersomniac

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Posted 29 August 2013 - 01:58 PM

I'm narcoleptic.  My initial diagnosis was IH until I started experiencing cataplexy, so my name is a bit misleading.  Still, my doc won't touch Xyrem with a barge pole, because of patients who died or went crazy while taking it.  He told me that it was more dangerous than Luminal, Seconal, or Nembutal -- barbs that nobody uses anymore.

 

It's all moot anyway -- my insurance will only pay for Xyrem for severe full body collapse cataplexy, and the doc has to actually witness it.  Can you believe that?  My cataplexy is nowhere near that bad.  I wanted to see if it would reduce my EDS so I could back off the stimulants.  They're wrecking my heart.







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