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I'm Totally Scared Of Xyrem :(

narcolepsy xyrem provigil nuvigil adderall hypersomnia

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#1 lidiamonroe

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Posted 23 July 2013 - 06:48 PM

After months of going through the diagnosis process I finally got the N diagnosis with Cataplexy- even though I never went into REM. My neurologist said she had to give me the diagnosis because in all my tests I fell asleep under 2 minutes, plus her neurological tests showed cataplexy. It's been a nightmare figuring out what was wrong, as you all know :)

Taking Provigil/Nuvigil just left me sleepy but not being able to sleep - it was almost torture - and I could take Adderall and go straight to sleep. Not to mention I hate the way they feel.

Finally my insurance picked up the Xyrem tab and I'm to start in 2 days. I'm scared. It seems like such a powerful drug! Can someone answer a few questions for me about taking Xyrem?

Does it make you totally out of it when you take it, or are you able to get out of bed if you need to? If there's a fire or emergency, can you wake up? I have stairs in my house - will I be able to walk down the stairs? Can I still let my little dog (4 lbs) sleep in my bed, or will it be dangerous that I might not notice if I roll over her? Does your breathing slow down a lot? Does it have any major side effects?

.... :/

#2 Hank

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Posted 23 July 2013 - 07:32 PM

After months of going through the diagnosis process I finally got the N diagnosis with Cataplexy- even though I never went into REM. My neurologist said she had to give me the diagnosis because in all my tests I fell asleep under 2 minutes, plus her neurological tests showed cataplexy. It's been a nightmare figuring out what was wrong, as you all know :)

Taking Provigil/Nuvigil just left me sleepy but not being able to sleep - it was almost torture - and I could take Adderall and go straight to sleep. Not to mention I hate the way they feel.

Finally my insurance picked up the Xyrem tab and I'm to start in 2 days. I'm scared. It seems like such a powerful drug! Can someone answer a few questions for me about taking Xyrem?

Does it make you totally out of it when you take it, or are you able to get out of bed if you need to? If there's a fire or emergency, can you wake up? I have stairs in my house - will I be able to walk down the stairs? Can I still let my little dog (4 lbs) sleep in my bed, or will it be dangerous that I might not notice if I roll over her? Does your breathing slow down a lot? Does it have any major side effects?

.... :/

The initial dose of Xyrem will be 2.25g twice per night. The effects of this low dose will not be the same as when you adjust over time to higher doses.

 

It has been a miracle drug for me for reducing my EDS significantly, even though I discontinued it 6 months ago.

 

Completely relax yourself in the evening. Unwind. Don't eat at least 2 hours before dose 1.

 

Mix your Xyrem doses before bed time. Set your alarm for 2.5 hrs or so after dose 1.

 

Get in bed, relax, get sleepy. Take dose 1 and turn out the light. Don't stay up and wait to just fall asleep with the tv on for example. this is key.

 

Consider memorizing a poem or verse to keep your mind occupied if you start thinking too much.

 

When you take dose 2, which you left on your night stand, don't turn on the light and put your head back on the pillow.

 

Consider using an eye mask and a white noise machine to cover any sounds and light that could interfere.

 

You can get up and function if necessary, but don't plan on doing so. Just plan on allowing yourself to sleep. Being awake on Xyrem is not so pleasant.

 

Don't look on the forums for peoples negative experiences- people are less likely to post their successes- and there are many.

 

Don't let yourself get stress or anxious about this process. Just follow the recommended steps and let it run its course.

 

Your dog should be fine in bed with  you and you will continue to breathe. Remember- reduce your anxiety and don't look for other peoples side effects in the forums



#3 Megssosleepy

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Posted 24 July 2013 - 11:01 AM

I couldn't agree more with Hank... Don't read people's bad experiences everyone is sooooo different.

 

My pup (10lbs) sleeps in the bed with me and I never worry about rolling on top of him... really I hardly moved an inch while in such a peaceful deep sleep.

 

I am so used to Xyrem that I wake myself almost on the dot every night at 2 take use the restroom and take my second dose.  When I get up at 2 there is so little Xyrem left in my system that it is very easy to walk to the bathroom, I don't run into the wall or anything like that. 

 

Please realize that tirating isn't all that fun, but go slow, take your time, relax, don't overthink it... everything will be fine and you will be sleeping like a baby in no time. 



#4 lidiamonroe

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Posted 24 July 2013 - 12:31 PM

Thank you both so much :)

#5 DeathRabbit

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Posted 24 July 2013 - 01:56 PM

Yeah, totally don't worry about it putting you like a light at the first dose. I actually got more wired by my first dose level. It wasn't until I hit 3.75x2 that I really felt anything significant. You'll be fine hun. :) Just try not to spend too much time dwelling on it and definitely don't scour the internet for side effects or horror stories. It's not goign to make for good sleep if you lay awake dwelling on everything that could go wrong!!



#6 WitlessKim

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Posted 24 July 2013 - 10:49 PM

Hank covered everything wonderfully. I would add that if something happens, you will be able to react. As he said, it's not pleasant being awake on Xyrem, but its doable. My three year old threw up one night and I was able to go take care of it quickly and stumble on back to bed. I was a bit groggy but it all went well and then I went back to sleep. Every one is different, but that was my experience. I was terrified at first to start Xyrem but I love the benefits.





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