4 replies to this topic

[austeenob]

I've been experimenting with Xyrem for 2 months now. It hasn't been consistent the past few weeks because of working and getting home really late.
I'm 20, I unload trucks at Lowe's from 6-10:30, every thurs-sun. I've now had the symptoms of narcolepsy for about two years now. I take Xyrem to try and help with the daytime sleepiness.
When I first started taking it two months ago it helped a little bit, each dose was longer sleep then the next. I hit 3.75 MG per dose at 11:30; I woke up with my old typical, energized kinda self. I was
fidgety, working out and on-the-go doing things, all the way from 7:30-5:00 until i needed a quick 30 min. snoozer; Which was great to me. Now, I am on 4.5 or 4.0 MG per dose and I seem to sleep longer; 3 hours and 40 mins on the first dose and nearly 4-5 hours on the second dose. BUT, I wake up at about 7:30 and feel.. alright. I end up laying in bed and going back to sleep for about 30 mins of NON-xyrem sleep, and wake up feeling a little better. BUT THEN,about 2 hours after 8:00.. (10:00) I hit a wall of body fatigue already. Lately because off the mess, I've been taking the 10 o'clock 30 minute nap and the 2-3 o'clock 30 min nap..

Question:
1)Is my dose too high and spilling over?
2)Is it not working effectively, because of the late time of taking the dose?
3)Is the hours of intense physical labor just and hour before sleeping causing me to not get the 'ideally recommended' sleep?
4)Is having to pee every night, usually in between doses, but sometime on the second dose I wake up having to pee; an distraction the 'ideally recommended' sleep?
5)Is me not having the same on dot time every night and a few nights just falling a sleep and taking the 2nd dose; throwing my whole Xyrem experience off now?
6)I wonder if taking the same dose every night at the same time will eliminate these naps i'm taking with random times of taking the doses overnight at 4.0 MG per-dose
7)When I wake up about 3 1/2 hours after my first dose, I wait till I'm fully awake, I don't set an alarm to wake me up to take it, IS THAT BAD?
8)Am I not getting enough REM/NON-Xyrem sleep if it feel tired from waking up from the 2nd dose?
9)Are naps during the day preventing me from sleeping as well as I could at night?
10)Will naps keep happening on Xyrem until my sleep debt is eliminated?

Conclusion:
What are the best tips & advice of your own methods; or anything I'm not doing correctly that you can tell me about?


Thank You!

[Megssosleepy]

7)When I wake up about 3 1/2 hours after my first dose, I wait till I'm fully awake, I don't set an alarm to wake me up to take it, IS THAT BAD?

This question stood out to me, I don't use the alarm because I know I will wake 3-3.15 hours after taking the first dose... I wake look at the clock (don't really need to cuz I know what it will say) take my larger second dose and get 3-4 hours more. The second dose relies on the first, so you shouldnt be letting yourself fully awake... just wake take it and pass right back out (sometimes it takes 5 mins or so)I found Setting the alarm for 4 hours later was a bad idea because I don't get 4 hours on each dose and it would wake me after I had taken the second! I do have my morning alarm set, but always am awake before it goes off at 5:30 am

[cloudtalk]

I've been on xyrem for a month, so I'm obviously no expert, but I've been trying to figure this stuff out, and these are my thoughts on your questions.

1)Is my dose too high and spilling over?

Well, if the lower dose was working better maybe you should go back to that. I don't think everyone really needs 8 hours of sleep. You need the right amount for you, which might be more or less or broken up into pieces. I'm starting to think maybe I need to sleep 6 hours at night and have two 1 hour naps during the day, to function semi-normally.

2)Is it not working effectively, because of the late time of taking the dose?

I don't see how the time of day you take the medicine would make any difference, as long as you get some exposure to sunlight and a sufficient amount of sleep.

3)Is the hours of intense physical labor just and hour before sleeping causing me to not get the 'ideally recommended' sleep?

I doubt it. If anything I would think you'd sleep better.

4)Is having to pee every night, usually in between doses, but sometime on the second dose I wake up having to pee; an distraction the 'ideally recommended' sleep?

That happens because of all the sodium in xyrem, I don't think it's really disrupted. From what I've heard it's pretty normal to get up at some point in the night then go back to sleep.

5)Is me not having the same on dot time every night and a few nights just falling a sleep and taking the 2nd dose; throwing my whole Xyrem experience off now?

I don't see why you'd need to go to sleep at exactly the same time every night, but I try to keep it in a four hour window, like I go to sleep everynight between 10pm-2am.

6)I wonder if taking the same dose every night at the same time will eliminate these naps i'm taking with random times of taking the doses overnight at 4.0 MG per-dose

I think maybe since narcolepsy has killed most of the cells in our brains that regulate sleep and wakefulness we might need to take naps during the day. I've found that even if I don't feel as tired during the day, my brain seems to get tired, and I get really overwhelmed and anxious if I don't take naps when I need to.

7)When I wake up about 3 1/2 hours after my first dose, I wait till I'm fully awake, I don't set an alarm to wake me up to take it, IS THAT BAD?

I don't think you need to set an alarm, just take the second dose as soon as you can when you wake up, don't wait to feel awake. I usually feel pretty confused at first and it takes me a few minutes to figure out I need to take the second dose, but then I take it and go back to sleep.

8)Am I not getting enough REM/NON-Xyrem sleep if it feel tired from waking up from the 2nd dose?

I don't know, but maybe that's why you were doing better on a lower dose.

9)Are naps during the day preventing me from sleeping as well as I could at night?

Probably not, as long as your total time spent asleep on any given day isn't longer than 9 hours. I think it's probably important to do be active during most the other 15-16 hours.

10)Will naps keep happening on Xyrem until my sleep debt is eliminated?

That would be nice to not need naps anymore, but I wouldn't count on it. From what I've read our problem is not only that we don't naturally sleep properly, but we aren't awake properly either. The lines between the two are blurred or something, like wakefulness intrudes on our sleep and sleepiness intrudes on times we should be wakeful. I've read some articles about it, there was at least one that explained it that way.

[Contemplative]

I've been experimenting with Xyrem for 2 months now. It hasn't been consistent the past few weeks because of working and getting home really late.
I'm 20, I unload trucks at Lowe's from 6-10:30, every thurs-sun. I've now had the symptoms of narcolepsy for about two years now. I take Xyrem to try and help with the daytime sleepiness.
When I first started taking it two months ago it helped a little bit, each dose was longer sleep then the next. I hit 3.75 MG per dose at 11:30; I woke up with my old typical, energized kinda self. I was
fidgety, working out and on-the-go doing things, all the way from 7:30-5:00 until i needed a quick 30 min. snoozer; Which was great to me. Now, I am on 4.5 or 4.0 MG per dose and I seem to sleep longer; 3 hours and 40 mins on the first dose and nearly 4-5 hours on the second dose. BUT, I wake up at about 7:30 and feel.. alright. I end up laying in bed and going back to sleep for about 30 mins of NON-xyrem sleep, and wake up feeling a little better. BUT THEN,about 2 hours after 8:00.. (10:00) I hit a wall of body fatigue already. Lately because off the mess, I've been taking the 10 o'clock 30 minute nap and the 2-3 o'clock 30 min nap..

Question:
1)Is my dose too high and spilling over?
2)Is it not working effectively, because of the late time of taking the dose?
3)Is the hours of intense physical labor just and hour before sleeping causing me to not get the 'ideally recommended' sleep?
4)Is having to pee every night, usually in between doses, but sometime on the second dose I wake up having to pee; an distraction the 'ideally recommended' sleep?
5)Is me not having the same on dot time every night and a few nights just falling a sleep and taking the 2nd dose; throwing my whole Xyrem experience off now?
6)I wonder if taking the same dose every night at the same time will eliminate these naps i'm taking with random times of taking the doses overnight at 4.0 MG per-dose
7)When I wake up about 3 1/2 hours after my first dose, I wait till I'm fully awake, I don't set an alarm to wake me up to take it, IS THAT BAD?
8)Am I not getting enough REM/NON-Xyrem sleep if it feel tired from waking up from the 2nd dose?
9)Are naps during the day preventing me from sleeping as well as I could at night?
10)Will naps keep happening on Xyrem until my sleep debt is eliminated?

Conclusion:
What are the best tips & advice of your own methods; or anything I'm not doing correctly that you can tell me about?


Thank You!

Here is just from my personal experience with several trials of Xyrem dating from when it was first approved. I am no expert. To me, it is critical to keep the same sleep and wake times for example I go to bed at 10 and get up at 6 or as close as possible. I also try not to exercise too close to bedtime as it is often a stimulant to the body. Those two pieces of advice have been drilled into my head by all the literature, physician recommendations and personal experience. Xyrem comes with the directions of taking the second dose 2-4 hours after the first so unfortunately I have to set an alarm and I usually fall right back to sleep. The problem I've been having is that I'm confused when the alarm goes off and can't process that I need to take the second dose sometimes or that I cannot process how to turn the alarm clock off, my poor housemate.

Sleep debt will hopefully decrease over time and for me, two scheduled 20 minute naps plus an additional one if I listen to my body occasionally, are absolutely needed for me and part of my overall treatment plan including medication and behavioral modification. Hope this helps a bit. Please keep us posted.

[Hank]

I've been experimenting with Xyrem for 2 months now. It hasn't been consistent the past few weeks because of working and getting home really late.
I'm 20, I unload trucks at Lowe's from 6-10:30, every thurs-sun. I've now had the symptoms of narcolepsy for about two years now. I take Xyrem to try and help with the daytime sleepiness.
When I first started taking it two months ago it helped a little bit, each dose was longer sleep then the next. I hit 3.75 MG per dose at 11:30; I woke up with my old typical, energized kinda self. I was
fidgety, working out and on-the-go doing things, all the way from 7:30-5:00 until i needed a quick 30 min. snoozer; Which was great to me. Now, I am on 4.5 or 4.0 MG per dose and I seem to sleep longer; 3 hours and 40 mins on the first dose and nearly 4-5 hours on the second dose. BUT, I wake up at about 7:30 and feel.. alright. I end up laying in bed and going back to sleep for about 30 mins of NON-xyrem sleep, and wake up feeling a little better. BUT THEN,about 2 hours after 8:00.. (10:00) I hit a wall of body fatigue already. Lately because off the mess, I've been taking the 10 o'clock 30 minute nap and the 2-3 o'clock 30 min nap..

Question:
1)Is my dose too high and spilling over?
2)Is it not working effectively, because of the late time of taking the dose?
3)Is the hours of intense physical labor just and hour before sleeping causing me to not get the 'ideally recommended' sleep?
4)Is having to pee every night, usually in between doses, but sometime on the second dose I wake up having to pee; an distraction the 'ideally recommended' sleep?

During deep sleep, a hormone is released that decreases urine production, so that morning urine is dark and concentrated (sorry- true though). If you are peeing frequently at night, it may be because you are not getting enough deep sleep.
5)Is me not having the same on dot time every night and a few nights just falling a sleep and taking the 2nd dose; throwing my whole Xyrem experience off now?

Probably. You did not mention when you eat dinner. I have noticed that food has a huge impact on how well Xyrem works. No food within 3 hours of dose 1 has made a great improvement for me.


6)I wonder if taking the same dose every night at the same time will eliminate these naps i'm taking with random times of taking the doses overnight at 4.0 MG per-dose

Everything I have read and all advice says that good sleep hygiene requires regular sleep and wake times. My bed time has always been 11 pm. Since Xyrem I take Dose 1 at 10:30 pm (+/- 15 min), Dose 2 at 1:15 am (always) and wake up at 6:30. Once I wake up, I get out of bed and into the shower.

You should not drive for 6 hours after dose 2. I take our daughters to school on my way to work at 7:30, that's why I always do 1:15 am. I use the vibrating pillow alarm sent with my first Xyrem shipment.

7)When I wake up about 3 1/2 hours after my first dose, I wait till I'm fully awake, I don't set an alarm to wake me up to take it, IS THAT BAD?

I don't think this is helping you at all. There is no need to be fully awake. If I ride dose 1 into dose 2, my whole night is better and the next day also. Just keep your mixed Xyrem dose next to you and take it when the alarm wakes you. If you keep a routine, you will train yourself into a routine. A routine removes a lot of guessing about what is causing problems. And having no routine can cause many problems. I would suggest that you start a routine and see what problems remain after a week or two. Some problems may just go away on their own. And then you will know more answers to your questions.


8)Am I not getting enough REM/NON-Xyrem sleep if it feel tired from waking up from the 2nd dose?

How many hours after dose 2 are you waking up. Remember, you need 6 hours before it is safe to drive. If dose 2 is too late, you may not be giving yourself enough time in the morning. Make sure Xyrem metabolizes while you sleep rather than while you are awake.


9)Are naps during the day preventing me from sleeping as well as I could at night?


I do not nap during the day. If I do, it ruins my night sleep. I can only nap when I don't want to. If I am drowsy, I move around. But I know a lot of people really benefit from naps.


10)Will naps keep happening on Xyrem until my sleep debt is eliminated?

I have always managed EDS with a consistent sleep/wake schedule, exercise and good diet. With Xyrem and Adderall, my EDS is practically non-existent. I never knew it was possible and I cannot believe I lived with that for so long.

Conclusion:
What are the best tips & advice of your own methods; or anything I'm not doing correctly that you can tell me about?

Regular Sleep/ Wake schedule. Dose 2 at the same time every night, with a slightly flexible dose 1 time.

No caffeine, little refined sugar, lean protein during the day, dinner 3 hours before dose 1. Lots of water during the morning/day, but not late evening. Potassium and multivitamin supplements. Regular exercise. No alcohol (with exceptions)


Thank You!

I hope you find all the answers to your questions. I live well with this undiagnosed for a long time- it was hard. I am determined to squeeze every benefit out of Xyrem.