melanie726

Xyrem Questions

9 posts in this topic

Hi everyone,

 

I've been taking Xyrem for about a year now. Until recently I never kept a consistant sleep schedule or bothered taking the second dose of Xyrem. Over the past couple of months I became super strict with my sleep schedule, keeping it the same, and started taking the second dose of Xyrem. At first when the doses would wear off I would be wide awake, so taking the second dose was incredibly helpful getting out of bed in the morning and finally getting to work on time. But now I haven't been experiencing the same effects. After the first dose wears off its difficult to wake up to take the second one and the second dose wears off earlier so I fall back asleep for a couple hours making it harder to get up in the morning.

 

I'm still trying to figure out the rhymes and reasonings behind getting Xyrem to work well for me and I know everyone is different but if anyone has any advice I would appreciate it!

 

A couple things I'm wondering is when taking Xyrem do you need the same amount of hours of sleep? Am I giving myself too much time since Xyrem only lasts for me a few hours? (7-8 hours)

 

Is there anything that I can do to make the doses last longer? Should I avoid food when taking it or eat a snack before?

 

Thanks everyone :)

 

 

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Melanie,

I'm currently off Xyrem due to side effects, but as a newbie to Xyrem, I'm discouraged that the pharmaceutical company isn't able to better address individual reactions to this drug. It really does seem like it's hit or miss. If I decide to tackle a fourth trial of Xyrem I know it means I 'll have to endure weeks of side effects- this really puts me off this drug. I'm hoping other options, less than the "miracle" of Xyrem work for me. I'd be happy with 4 solid hours! I encourage you to report every detail to Xyrem!!!!

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What dose are you on?

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Why are you not taking the same dose both times?

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Yeah I'm not sure. I had a big confusing conversation about that with my doctor. I didn't understand why they wouldn't be the same dosage. He said he wanted to minimize the chance of having a hangover effect. I think he's just too cautious with medications. I left him a message about increasing it and I'm waiting for him to get back to me.

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My doctor is very experienced with dosing, and he starts all his patients at 3.0 for both doses because the lower doses seem to cause more problems. He believes getting to the therapeutic dose, usually 4.5, is important while seeing what the side effects are. Only at the highest dose for you do you start to really get the longer, deep sleep and start to work off the years of sleep debt. I went up pretty quickly but then had some pretty strong "hangover" results so he recommended the 4.5 for the first dose and to re-work my way back up to it for the second dose.

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Each dose of Xyrem only lasts 4 hours. That's why you are supposed to set an alarm to wake up and take the 2nd dose. I recommend setting your phone to vibrate and putting the alarm on there and set it on a stand next to your bed. You'll here it vibrate to wake up since we are such light sleepers, and you won't get woke up as much (alarmed) by an actual audio alarm so that you can go back to sleep easier.  Also, you're not supposed to eat for 2 hours before you take the Xyrem, some people here stop eating 3 to 4 hours before hand.  Any food in you will prevent the Xyrem from absorbing and working properly.  This means no snacking between doses either!  When it's time to stop eating stick to strictly water to drink so that there's no extra calories being digested in you that will prevent the Xyrem from working.  The water is really good to help prevent/combat the dehydration that can come with Xyrem's high sodium content!

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