3 replies to this topic

[Lunamaria]

Ok, so I'm loving my Xyrem, and I'm stopping at the 3.0 ml twice nightly dose because I'm a very small person (115 lbs, 5'2") and 3.75 made me violently ill. However, I have been having serious issues with that pillow alarm they sent me with it. The first week or so it worked great, woke me up every time, but now I can't seem to get it to work-I don't know if it's buzzing too softly now, or if it's not buzzing at all. I replaced the batteries, but it hasnt really gotten any better. AGHHH! It's really irritating, because I desperately want to return to my out of state college with this treatment now in place, but it doesnt work as well without that second dose! Help? Should I get a new one, call Xyrem, what?

[sleepylune]

My xyrem alarm never worked. I bought two online from amazon instead and did some experimenting. The first one was a vibrating watch and it worked really well for a few weeks until I became too smart in my sleep and started turning it off without getting up to take my second dose. Also, there was not a "lock" button so the times could be easily changed whenever i rolled over. Now I use a travel tim vibrating alarm clock. I can clip it to my pillow and it has a "lock" feature so the alarm/time won't change in the night. One downside is that it takes 2 AA and 1 AAA battery, and the AAA tends to be used up rather quickly. I unfortunately didn't notice that the battery was dead because the time was still working. The AAA battery is responsible for the vibrating function. I didn't take my second dose for about 3 days in a row and thought I was just turning it off again. Now I regularly check that the vibrating alarm will go off.

Neither one of these items were very expensive (both less than $20 each). Both only have one alarm setting so you would need another alarm for the morning to get up. Hope this was of some help.

[Megssosleepy]

Ok, so I'm loving my Xyrem, and I'm stopping at the 3.0 ml twice nightly dose because I'm a very small person (115 lbs, 5'2") and 3.75 made me violently ill. However, I have been having serious issues with that pillow alarm they sent me with it. The first week or so it worked great, woke me up every time, but now I can't seem to get it to work-I don't know if it's buzzing too softly now, or if it's not buzzing at all. I replaced the batteries, but it hasnt really gotten any better. AGHHH! It's really irritating, because I desperately want to return to my out of state college with this treatment now in place, but it doesnt work as well without that second dose! Help? Should I get a new one, call Xyrem, what?

I am curious why you are stopping at 3.0? Do you get the full 8 hours on such a low dose? I found that the lower doses were really inconsistent for me. Did you tirate from 3.0 to 3.75? You may have gotten ill due to such a huge jump. It took my body a weeks to get used to each dose.

I guess my reason for asking is due to the fact that I wasn't getting amazing sleep till I got to 4.5x2 (and I am smaller then you).

[SeeBee]

I am curious why you are stopping at 3.0? Do you get the full 8 hours on such a low dose? I found that the lower doses were really inconsistent for me. Did you tirate from 3.0 to 3.75? You may have gotten ill due to such a huge jump. It took my body a weeks to get used to each dose.

I guess my reason for asking is due to the fact that I wasn't getting amazing sleep till I got to 4.5x2 (and I am smaller then you).

Everyone's different, though It sounds like she's doing well on 3.0; in fact, well enough that she's sleeping 4+ hours on the first dose. Even if she's not getting a full 8 hours, she sounds happy with what she's getting, which is what really matters right?

Luna, have you tried setting the alarm for sometime during the day while you're awake, to make sure the vibrate function actually works? Barring that, is it possible that you're turning it off in your sleep? I've done that quite a few times...