Catgg

Xyrem Tricks

17 posts in this topic

Okay so i have some superstitious-like strategies for taking my xyrem that seem to work.

1. 1st and 2nd doses have to be equal

2. I use filtered water at exactly the same line measurement.

3. I go to bed at same time every night

4.I mix my xyrem dose at least 1 hour before and toss upside down to mix once.

5.I take calcium with vit. D amd Mag. every night after eating, at least 900 mg of Ca.

6.I eat at same time every night (try to) 3 hours before bed.

7. I sleep with very little clothes on.

8. when I wake up early from second dose I get up and sleep on the couch

Hope this helps others, although I guess it's silly. Recently I strayed and went to bed at a different time and had a bad day with cataplexy and sleepiness-first day like that in a while.

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Okay so i have some superstitious-like strategies for taking my xyrem that seem to work.

1. 1st and 2nd doses have to be equal

2. I use filtered water at exactly the same line measurement.

3. I go to bed at same time every night

4.I mix my xyrem dose at least 1 hour before and toss upside down to mix once.

5.I take calcium with vit. D amd Mag. every night after eating, at least 900 mg of Ca.

6.I eat at same time every night (try to) 3 hours before bed.

7. I sleep with very little clothes on.

8. when I wake up early from second dose I get up and sleep on the couch

Hope this helps others, although I guess it's silly. Recently I strayed and went to bed at a different time and had a bad day with cataplexy and sleepiness-first day like that in a while.

How do you manage to eat at the same time every night? I just started Xyrem and Im having a really hard time getting everything I need to do done by the time I need to take it and sleep. Its really stressing me out. What happens if you dont have a full 8 hours to sleep? Would you just take one does? Sorry.. Im really new to this and I have nooo clue what Im doing..

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How do you manage to eat at the same time every night? I just started Xyrem and Im having a really hard time getting everything I need to do done by the time I need to take it and sleep. Its really stressing me out. What happens if you dont have a full 8 hours to sleep? Would you just take one does? Sorry.. Im really new to this and I have nooo clue what Im doing..

My sleep doc told me I can take my Xyrem as long as the doses are at least 2-1/2 hrs apart. My goal is to take it at 9pm and again at 1am, but often times its more like 9:30 or 10pm. I also have just way to much that has to get done to make it to bed by 9 every night. If there are nights that its later than I will only take one dose, but I do try to get them both in. Don't stress too much. I also try not to eat at least 2 hrs before if not more-I have found that if I eat something heavy right around that 2 hr cutoff the Xyrem seems to be less effective. I'm relatively new to the Xyrem also and I've documented it from the start @ http://narcogirl.blogspot.com/ . I thought it might be helpful to someone else just starting out with it and wondering how its worked out for other people. Good luck!

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

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Plug your nose and do the ew ew ew dance.

That worked for me when I was taking it.

jenji

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I started this dialogue and then couldn't find energy, I haven't been on here for a long time. I still take xyrem because I can't function without it because my cataplexy is so bad. I think I'm getting a little better all the time. Still God tired at times, but cataplexy rare and short-lived.

I'm not so regimented anymore, on max dose, and hate the feeling I have most mornings when I wake up too early and can't relax. It takes 2 hours or so for my body to feel relaxed after waking up.

I'll try and get back on soon.

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

Brush your teeth right before taking it. For some reason it tastes less salty that way.

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How do you manage to eat at the same time every night? I just started Xyrem and Im having a really hard time getting everything I need to do done by the time I need to take it and sleep. Its really stressing me out. What happens if you dont have a full 8 hours to sleep? Would you just take one does? Sorry.. Im really new to this and I have nooo clue what Im doing..

I think if you have 6 hours to sleep that be okay to take both doses. I read that it takes 6 hours after last dose to clear though, so be careful driving - if you drive.

I'm structured because I have a small child.

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Here are my suggestions:

I stop eating at 8:00 and take my Xyrem between 10:00-11:00pm.

I also have my bottles lined so that I just pour my mixture in.

I also mix my xyrem early and shake it up, it works better.

My Mixture:

I mix  a packet of Cool-aid and  3/4 cup of Splenda with 2 qt of water (old 2 litter bottle). 

Then I put some of it in a smaller water bottle and keep by my bed.

I use some of that each night  to mix with the xyrem. (The splenda doesn't change the effect at least for me). 

 It makes the taste a lot better, not great but better.  At least I don't dread taking it now lol

Oh I'm on 2.5 2x a night.

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What I do:

1. Stop eating by 7 or 8 at night.

2. I have a water bottle of Crystal Light (raspberry or peach raspberry) in my fridge so that it is cold when I need to drink it.

3. I measure out the crystal light into my containers and then add 3.5 X 2 of the Xyrem and mix it around.

4. I normally take my first dose at 10pm.

5. The plan is to take that second dose at 1am... although the problem I am having now is that my alarm goes off at 1am and 1:30am and I am just shutting it off not realizing why it is waking me out! It's kinda frustrating because I have been on Xyrem for 3 months and depending on the night I won't wake up until I wake myself up around 2-3 because I just wake up and then I take it.

My Xyrem has been working really well and recommend it to anyone!

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

from what i understand, although i haven't tried it because i am okay getting it down with water, it to mix the xyrem with crystal lite.

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

Use a large bendy straw to bypass all the taste buds that are associated with salt. its tricky the first few times but it works. Also I always think about all the worse things I could be putting in my mouth. A little dose of gross over grosser ....lol

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

I have a suggestion... you can mix it with sugar free juice, like crystal light or generic grocery store brands. I usually make a pitcher of crystal light lemonade and pour it into the little dosage thingy and then add the X. it doesn't taste good, but it is completely tolerable. this was a suggestion from my doctor when i first started taking it. she said that the sugar free juice is basically flavored water and does nothing to alter how the X works. hope this helps!

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These are all great! Lol. This reminded me of a random discussion that we had at the conference. The kool-aid thing kept coming up but it won't work for me as I wear a retainer at night (don't want cavities nor do I want it to stain). I like the bendy straw idea. For me, if I mix it with super cold water, its enough to numb my taste buds and dull the salty taste. And taking it like a "shot" helps (similar to the bendy straw idea - bypass the taste buds). I'm interested to hear more ideas... Also, I wonder if there's certain "mixers" that interfere with the drug. Does anybody know of any? (aside from alcohol or other drugs).

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

My Doc told me to take it with Crystal Lite, I mix this fairly strong, about 1/3 less water than usual. This works wonders for me. You can also mix it with diet Kool Aid.

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These are all great! Lol. This reminded me of a random discussion that we had at the conference. The kool-aid thing kept coming up but it won't work for me as I wear a retainer at night (don't want cavities nor do I want it to stain). I like the bendy straw idea. For me, if I mix it with super cold water, its enough to numb my taste buds and dull the salty taste. And taking it like a "shot" helps (similar to the bendy straw idea - bypass the taste buds). I'm interested to hear more ideas... Also, I wonder if there's certain "mixers" that interfere with the drug. Does anybody know of any? (aside from alcohol or other drugs).

Mee - My understanding from SDS is that we shouldn't mix Xyrem with any carbonated drinks, such as sodas. They change the Ph of the Xyrem and change its effectiveness. I also asked the SDS pharmacist whether things like Pepto Bismol might also change the Ph of the Xyrem in the stomach if taken around the same time as the Xyrem. The pharmacist told me to avoid taking Pepto Bismol within 2 hours before or after a dose of Xyrem.

Saraiah

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I have had to postpone taking my 4.5g x2 because of the god awful consistency and taste (that of boiled down and condensed sea water). I'm upset because it was really helpful, any tricks out there to help get around my newly aquired xyrem gag reflex?

mix it with 1/4c. grape crystal light...you can't even taste the salt. I actually use the Welches brand and it actually tastes kind of good smile.gif

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