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Xyrem Tips And Tricks


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#1 SeeBee

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Posted 07 December 2012 - 04:26 AM

I've noticed that there's a fair amount of people just starting out on Xyrem here, so I thought I'd share some things I wish I'd known when I started (I've been on it for 2 years now.) Hope this helps someone :)

- Pick a bedtime and stick with it as much as possible. Seriously, for me this makes the difference between 5 hours' sleep and waking up groggy, or 8 hours' sleep and waking up refreshed.

- Fasting for 2 hours before your first dose is a guideline, not a rule. I found that I need more like 4 hours, or even 6 after especially rich or fatty meals.

- Chill on the fluids an hour or two before bed, drink just enough water to chase away the taste after your dose, and pee before you retire to bed. Not only is bedwetting unsexy to most people, a full bladder can wake you, or prevent you from sleeping in the first place.

- If you have trouble falling asleep after taking your dose, experiment with quiet activities while you wait. My average wait time to fall asleep post-dose is about 20 minutes, which feels long and rather boring to those of us used to falling asleep in less than 5. Worrying will just keep you up longer, so do yourself a favor and meditate, or pick up some sudoku puzzles, or something.

- If your idea of "quiet activity" happens to be a bit naughty, beware the sudden post-dose libido spike. Sometimes it works out well, but be ready to assuage your partner's possible insecurities or hurt feelings in the morning should you pass out halfway through.

- If you have trouble staying asleep on Xyrem, examine your sleeping environment. If it's too bright, too hot, too loud, or whatever, fix it! Turn off the TV, cover the windows with construction paper, get a lighter comforter, wear earplugs, or turn on a little white noise. Such things can go a long way toward a better night's sleep, even on drugs.

- If you feel nauseous or dizzy when you first get up, try to eat or drink something. Milk, peanut butter, and other high-protein edibles work best for me, but your mileage may vary.


Most importantly, IMHO:

- NEVER drink alcohol with Xyrem. That's a fast track to a coma, and possibly death. If you had liquor earlier in the day/evening, wait until you are completely sober to take your dose.

- Give it time. Your body is going to be out of whack for a while, as you find your ideal dose, set up a sleep regimen, and (hopefully!) begin to get restful sleep again. It took my body about 6 months to start functioning in a manner approaching normal.

- Keeping the above point in mind, assess your situation often. In what ways is Xyrem working for you? In what ways isn't it? Do the pros outweigh the cons? Talk about these things with your doc, and remember that YOU are the sole judge of whether or not this medication is worth taking. Life's too short for medication that doesn't work in your favor!


Other Xyrem peeps, what advice would you give someone just starting out? Is there anything I missed? Feel free to chime in!




#2 desantisnm

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Posted 07 December 2012 - 09:28 AM

SeeBee,

This was great timing for me. I have been avoiding Xyrem for a long time (mainly nerves), but I have come to realize that just taking Nuvigil is not working for me. I finally got all of the information and am looking it over.

One of my big questions is, because of my job - I normally have to wake up at 7am. But at any given time, I may have to be up at 4am, 6am, etc. Does that mean if I have to be up at 4am, I need to go to bed at 8? Or my doctor said I could take only one dose in those cases. Does that work? Will I be okay on this if I have various days of change in my sleep schedule? Also, (to ask a real person, not the internet (i'm new to this! haha)), if I have to be up at 7am - when should I go to bed? I guess I have a serious fear of sleeping through my 8 alarm clocks and I am already on thin ice with my nice, but not always understanding, boss.


Thank you!!

#3 DeathRabbit

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Posted 07 December 2012 - 10:40 AM

I unfortunately, cannot do the liquid fasting bit. If I get dehydrated, it is impossible for me to sleep. That's a good tip about the food though.

#4 Megssosleepy

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Posted 07 December 2012 - 01:38 PM

SeeBee,

This was great timing for me. I have been avoiding Xyrem for a long time (mainly nerves), but I have come to realize that just taking Nuvigil is not working for me. I finally got all of the information and am looking it over.

One of my big questions is, because of my job - I normally have to wake up at 7am. But at any given time, I may have to be up at 4am, 6am, etc. Does that mean if I have to be up at 4am, I need to go to bed at 8? Or my doctor said I could take only one dose in those cases. Does that work? Will I be okay on this if I have various days of change in my sleep schedule? Also, (to ask a real person, not the internet (i'm new to this! haha)), if I have to be up at 7am - when should I go to bed? I guess I have a serious fear of sleeping through my 8 alarm clocks and I am already on thin ice with my nice, but not always understanding, boss.


Thank you!!


Although it is best for PWN to have a set sleeping schedule you are able to adjust when you take the Xyrem. 1 dose is not recommened. Just give yourself an 8 hour time frame... You will find that you may not need 8 alarm clock while on Xyrem... when its out of your system it tends to wake you up. So even if I turn the alarm off in my sleep or forget to set it, I wake up on my own about 4 hours after my first dose. I have to be up at 6:00am and I go to bed at 10:00 10:30... you just need 8hours.

#5 Megssosleepy

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Posted 07 December 2012 - 01:42 PM

I want to add, 2 hours of no food is a rule not a guideline... you can go longer if you would like but do not eat or drink anything except water 2 hours before your dose.

I take both doses with a few gulps of water (the meds give me terrible night sweats and I dont wanna wake with a headache) In the beginning I thought I needed more time w/o food before bed to sleep better. But, the whole tirating and getting used to the meds was the reason I wasnt sleeping well. Going to bed hungry with make you more ill!

Now that I have been on 4.5 for 2 months my body is used to it... no side effects and I make sure I eat something right before the 2 hour mark.

#6 SeeBee

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Posted 07 December 2012 - 05:16 PM

DeathRabbit, definitely let us know if changing your meal timing helps. As far as the liquids, that's totally understandable, I wake up with a dry throat sometimes and it sucks pretty bad (I hate getting out of bed in the middle of the night, especially on this stuff.) Hopefully you won't have to deal with bedwetting like I did, but even if you do, there are other workarounds.

desantisnm, I totally hear you on the nerves lol. I was really nervous when I started too. Honestly though, I found the beginning (and especially the first night) pretty underwhelming. Also, rest assured that even with a fairly irregular sleep schedule, you'll do just fine on Xyrem - in the grand scheme of things, as long as you're happy with the results you've got, that's plenty. Do try to start Xyrem when you have a day or two with few to no obligations, though, and plan for 8 hours of sleep every night if at all possible. This way, you have time to adjust and assess what this medication does to you and make sure it's safe for you in the beginning, and 8 hours a night will leave you with some leeway as your dosage changes. Trust me when I say that you don't want to plan on sleeping 6 hours and end up needing 8. Xyrem doesn't understand the concept of alarm clocks; I've been swiftly and brutally punished with severe nausea and the spins for getting up with too much in my system. If your body needs 8 hours and you can give it 6 at the absolute max, do as your doctor suggested and take a single dose. It's definitely not as effective as two doses in my experience, but it's better than nothing at all. Check back in when you can, and let us know how it goes!

To expand on what Megssosleepy said, different lengths of fasting time work for different people. I've got a slowish metabolism and supper is my biggest meal of the day, so naturally I need more time to digest than the standard 2 hours. I can drink a glass of juice to no ill effect an hour before I take my dose, but always stick with just water after that. Basically, start with 2 hours and re-evaluate from there - if you ate at 2 hours and can't get to sleep, give yourself more time to fast before bed tomorrow. If you ate at 2 hours and are SO STARVING that your grumbling stomach then gives you nightmares, try an hour and 45 mins tomorrow. In my experience, fat, caffeine, and protein are the biggest modifiers - the more of those I've had, the longer I need to fast.

That's interesting, sleepylune. I felt a little sick every morning for a couple of months after I got bumped up to 4.5, and also had to eat breakfast immediately upon waking, but never tried the saltines before bed thing. I wish I had known that back then!

Now if you'll excuse me, I'm gonna go take my daily nap :P
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ETA: Obviously, portions make a difference in how long you fast, too. Strawberries have no fat or protein, but if you eat 3 of those little green baskets of them immediately before bed, you bet they'll keep you from falling asleep. Also, GRRR at neighbors who do not understand the importance of naps. That is all.

#7 Delta

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Posted 07 December 2012 - 11:17 PM

desantismn, I just wanted to add that if you drive to work in the mornings, you should make sure there has been at least six hours between the time you took your second Xyrem dose and the time you get behind the wheel of your car. For example, if you have to leave for work at 7am, make sure you take your second dose by 1am or earlier. Sometimes I'm more comfortable waiting even longer, but six hours is what the literature in the Xyrem packaging says.