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Getting On The Xyrem Horse.


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#1 amazingracie28

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Posted 17 June 2009 - 10:41 AM

This is more of a comment than a question I guess.

So, I'm supposed to be starting Xyrem soon-doc just faxed the order to Jazz yesterday. I'm kind of freaked out about it. I have twin 4 year olds that like to wander up to my bedroom at some point nightly and I'm concerned that my husband won't hear them, though he did go yesterday and bought a motion detecting doorbell that should do the trick. Any handy hints? I just don't know what to expect-I'm more afraid of going on a bad trip than most things-I"ve read some horror stories!! UGH!



#2 Marcianna

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Posted 17 June 2009 - 11:07 AM

I can imagine you are worried I am too. i am supposed to start the meds myself sometime this summer. LOL and no one is more anti drug than me except for maybe Nancy Regan.... W have heard alot of horror stories here, if anyone cares to balance it out with positive stuff, that would be great. Gracie and I could sure use the pep talk!

#3 chimbakka

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Posted 17 June 2009 - 09:50 PM

QUOTE (Marcianna @ Jun 17 2009, 09:07 AM) <{POST_SNAPBACK}>
I can imagine you are worried I am too. i am supposed to start the meds myself sometime this summer. LOL and no one is more anti drug than me except for maybe Nancy Regan.... W have heard alot of horror stories here, if anyone cares to balance it out with positive stuff, that would be great. Gracie and I could sure use the pep talk!



well i haven't tried xyrem. BUT for positive... well no meds is horrible, as is being a slave to my hypothalamus and sleep whims. so i say SCREW YOU HYPOTHALAMUS and i'd seriously consider cutting off one of my hands if it meant a cure, so i'm for sure willing to take WHATEVER drug gives relief.
i figure, yes there are side effects and such. but what about the side effects of uncontrolled N? like waking up 80 years old and thinking "damn i spent 3/4 of my life in bed, and half the time awake feeling like *BEEP*"
even if meds that help me experience at least HALF of my hours awake but i had to die younger... well i'd rather experience somewhat of a life for shorter time thankyou than the hell that is N for a long miserable life

ok maybe no the MOST positive thing to say... but honestly, that's how i feel. any relief is worth it... i've already given too many hours of my life to this beast

#4 Henry G

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Posted 18 June 2009 - 12:39 AM

the problem is - that it strongly seems - no medicine or treatment works long-term

you try something new and then it's WOW - this is great, amazing .. etc

3 .. 6 .. or 9 months later, it's all back to zero again.

Provigil was great for me but after 4 months it was next to useless .. and then after 1-2 years it become hostile and destructive

Ambien / Zolpidem wonderful for 2 months - and then after that - the worst nightmare of my life for a good 4 years

If there was a permanent solution even if that meant cutting 10 years of someone's life .. fine - pretty worth it

But it seems, that when you try anything - you could still be shaving off years of your life but for no permanent gain.

I have never tried Xyrem - but am pretty sure it would be something like: Wow , thank goodness i can sleep well now. Wow, so much energy - I feel like superman .. And then 4-5-6 .. months later, I would be complaining of side effects and the treatment losing it's effectiveness .. not only that - end up being dependant, meaning no Xyrem = sleeping worse than ever before.

Narcolepsy is not quite like asthma, or diabetes - where a treatment to control the symptoms would suffice.

Narcolepsy is a disease that needs to be cured from the source, the cause - not the symptoms. Because the narco-body readjusts to any treatment you throw at it.

I haven't come across any person with chronic narcolepsy that suddenly said something like - I have tried everything for 20 years but now my narcolepsy has reduced by 50% for the last 3 years since I began taking this new med .. etc

What we need is a cure. Not newer meds and treatments.
Because whatever you do - the results are never long-lasting

#5 fido92

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Posted 20 June 2009 - 11:11 AM

I've been on Xyrem for going on 6 weeks now, up to 3.75 twice a night. At first, I too was nervous about being out of it, but it's not like that at all for me. I don't drop off to sleep as soon as I drink the stuff--it takes about 15-20 minutes or so to work for me (the first night it took about 40 minutes to work), and I can wake up if my dog comes scratching at the bed to go out. So now I'm sure to let the dog out first--then I do sleep for 4 hours almost to the minute (sometimes I'll wake up sooner, but not usually), and I take the second dose and that one sends me right back to sleep for another 4 hours--it wakes me up in 4 hours. Pretty cool actually.

I still get sleepy in the day, but not as much, not as often, and not as suddenly. I'm less moody and more relaxed. It's sort of strange being more awake during the day, but at least now I'm going into deep sleep and my brain can start to heal.

Also, before being diagnosed, I was taking Concerta and drinking about almost a case of Diet Coke all day and still falling asleep and all the other things--now on Xyrem, I take no Concerta and maybe 3-6 caffeine Diet Cokes; I've sort of lost the craving for cokes and for cigs as much. So that change ticked me off a bit--made me notice how boring I'd become, so I'm trying to think of finding something new to do--the house is cleaner, and I teach summer school from 8-1, but I might start working out again--I used to love going to the gym. Piano, guitar, and I'm starting to like to read again--not nodding off so soon.

So I'm liking the Xyrem so far, adjusting to the positive changes. (Oh yeah--the first week and around each dose increase, I went to bed and thought I couldn't fall sleep and was awake doing things that turns out, didn't happen at all. But not anymore [knock wood]. Keep waiting for the uncontrollable weight loss side-effect to kick in!)

Best of all, my 16 year old son notices that I'm not asleep all the time and that I laugh more and don't get so mad over little things--and I told him that now that I'm getting sleep, he's not as irritating (ha! we both laughed).

#6 Lais02

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Posted 20 June 2009 - 11:21 AM

I love Xyrem! I started it back in October, and my posts sounded just like yours. I was really afraid of it too. I'm so glad I gave it a chance though. It has completely changed my life. I can get 8 hours of sleep, and wake up feeling refreshed. I'll go all day without a nap, and my C is pretty nonexistent.

I recommend all of you who can't seem to find the right med to try Xyrem. It is the first time I feel like a medication is actually healing my body rather than hurting it! That is a HUGELY WONDERFUL feeling!!! I've lost weight (that needed to go) because by getting good sleep my metabolism is much better. I only missed 2 morning classes all semester... compared to when I wasn't on Xyrem I only made it to about 1/2 of my classes. I'm finally enjoying my life. smile.gif

Feel free to message me and ask questions.

#7 ulooktired

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Posted 20 June 2009 - 10:47 PM

QUOTE (Lais02 @ Jun 20 2009, 10:21 AM) <{POST_SNAPBACK}>
I love Xyrem! I started it back in October, and my posts sounded just like yours. I was really afraid of it too. I'm so glad I gave it a chance though. It has completely changed my life. I can get 8 hours of sleep, and wake up feeling refreshed. I'll go all day without a nap, and my C is pretty nonexistent.

I recommend all of you who can't seem to find the right med to try Xyrem. It is the first time I feel like a medication is actually healing my body rather than hurting it! That is a HUGELY WONDERFUL feeling!!! I've lost weight (that needed to go) because by getting good sleep my metabolism is much better. I only missed 2 morning classes all semester... compared to when I wasn't on Xyrem I only made it to about 1/2 of my classes. I'm finally enjoying my life. smile.gif

Feel free to message me and ask questions.


Me too, it's really working for me! I can sometimes forget I have this illness. But, even off one day will remind you - be warned.

#8 amazingracie28

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Posted 22 June 2009 - 01:57 PM

Wow-thanks! All your posts give me so much hope. It comes tomorrow but I'm not going to start it until the weekend since I don't know how I'll react to it. I'm nervous but excited at the same time. I thought about starting a blog about the Xyrem experience, from the begining since I haven't started it yet-wonder if anyone would read that...lol...



#9 amazingracie28

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Posted 22 June 2009 - 02:01 PM

QUOTE (fido92 @ Jun 20 2009, 11:11 AM) <{POST_SNAPBACK}>
I've been on Xyrem for going on 6 weeks now, up to 3.75 twice a night. At first, I too was nervous about being out of it, but it's not like that at all for me. I don't drop off to sleep as soon as I drink the stuff--it takes about 15-20 minutes or so to work for me (the first night it took about 40 minutes to work), and I can wake up if my dog comes scratching at the bed to go out. So now I'm sure to let the dog out first--then I do sleep for 4 hours almost to the minute (sometimes I'll wake up sooner, but not usually), and I take the second dose and that one sends me right back to sleep for another 4 hours--it wakes me up in 4 hours. Pretty cool actually.

I still get sleepy in the day, but not as much, not as often, and not as suddenly. I'm less moody and more relaxed. It's sort of strange being more awake during the day, but at least now I'm going into deep sleep and my brain can start to heal.

Also, before being diagnosed, I was taking Concerta and drinking about almost a case of Diet Coke all day and still falling asleep and all the other things--now on Xyrem, I take no Concerta and maybe 3-6 caffeine Diet Cokes; I've sort of lost the craving for cokes and for cigs as much. So that change ticked me off a bit--made me notice how boring I'd become, so I'm trying to think of finding something new to do--the house is cleaner, and I teach summer school from 8-1, but I might start working out again--I used to love going to the gym. Piano, guitar, and I'm starting to like to read again--not nodding off so soon.

So I'm liking the Xyrem so far, adjusting to the positive changes. (Oh yeah--the first week and around each dose increase, I went to bed and thought I couldn't fall sleep and was awake doing things that turns out, didn't happen at all. But not anymore [knock wood]. Keep waiting for the uncontrollable weight loss side-effect to kick in!)

Best of all, my 16 year old son notices that I'm not asleep all the time and that I laugh more and don't get so mad over little things--and I told him that now that I'm getting sleep, he's not as irritating (ha! we both laughed).



That's been one of my biggest problems with the N and the Adderall, I'm really moody and testy all the time at the smallest things-I have two 4 years olds so there's no shortage of things to snap about most days.......


#10 chimbakka

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Posted 25 June 2009 - 08:25 AM

I got some xyrem info at my appointment this week. for now im switching to celexa (from effexor - made me jittery) and dexedrine (from ritalin - gave me crazy GI side effects) and from lorazepam to clonazepam just to see if it's better or not.
but my question is this - for those on xyrem in canada, what is the cost? i know it's crazy expensive in the states, and im willing to guess it is here as well, but im wondering if anyone on here can give me a specific cost? thanks!