young people on xyrem?

[sleepydude]

hi everyone-

just wondering what your experiences have been like on xyrem as young people...
i am 25 and was recently diagnosed with narcolepsy, but without side effects. i am doing much better on adderall, but i still have plenty of bad days.

have any of you had any side effects from xyrem? any of you take it for EDS without cataplexy? when did you decide to take that leap?

Thanks!

[oregon]

Hey there--
I think that your question is a very important one.

I have tried a few different medications, Xyrem included, and I think that asking these questions are the best way to find out what's best for us as individuals.

I started Xyrem as part of their last trial stage, before it was approved for prescription. I was 18 years old at the time, and was in my first year of college.

There were many things that I liked about it. Mainly, I was able to cut my dose of daytime "uppers" way down, and my cataplexy improved markedly.

Here were the things that I did not like about it:
-When I had sleep paralysis and hallucinations before falling asleep, the last thing I remember was feeling like I was dying or paralyzed and being afraid I would never wake up.
-My hair began to thin and fall out.
-It could be unrelated, but I fractured and got contusions (bone bruses) on several bones in a short period of time in different incidences--still don't know if Xyrem is to blame. I started to bruise easily.
-It was hard to be in a college setting and not be able to stay up past my "bed time" to study, spend time with friends, or be a normal young person.
-Dry mouth was extreme.
-It was hard to have an intimate relationship with someone while passed out all night.
-When I moved into my own apartment, I was afraid that if there was a fire or an emergency, I would never know and never make it out. A bit freaky to think about.

I don't take Xyrem anymore for my own reasons, but I think it definitely works great for some people. I am still curious to see how younger people our age will be effected by longterm Xyrem.

My thoughts are that you should ask your doctor about Xyrem and ask lots of questions. If your doctor doesn't know, find one that has experience with it. It is a very new drug. There are still lots of things to find out about it. Maybe see if it's a good fit for your life and lifestyle.

Great question! I hope other people have things to say about it!

[sleepymoon]

Xyrem is by far the best thing that has ever happened to me. I've been on it 16 mos. I experienced side effects, I found ways to counteract them by taking magnesium and potassium. All good now. And they went away with time as I increased my dose gradually (very slowly, actually...precisely to minimize side effects) over the first 8 mos. Now I've been at the max dose (9ml x 2) for about 7 mos and I am finally starting to LIVE.

I would not trade it for anything! (Except a cure, naturally)

Side effects I experienced: increased blood pressure, trembling, and I was having muscle spasms which may have been due to Xyrem or other medications I was on.

Other factors affecting my experience: I had a LOT of chronic pain prior to taking Xyrem and had been diagnosed w/ankylosing spondylitis (painful inflammation/fusing of bones...turned out I didn't really have it anyway). I was on other meds that made me sick, but I became allergic to one and quit them all. I was already at an all-time low of 93lbs when I started Xyrem. Many people lose weight initially w/Xyrem. I have worked very hard to gain the weight back over the last 16 mos. I'm 104lbs now, and starting to look okay again. Hah.

Xyrem has given me the ability to wake up in the morning with a clear head, eyes open, and feeling ready for the day. I don't take any stimulants anymore...stopped Provigil about 8 mos ago. I still have one night of some tossing and turning when I'm PMSing, but after that it's back to normal - good quality sleep every night. I had pretty mild cataplexy before...but it was starting to get worse when I asked my doc for Xyrem.

Good luck to you. I hope you try it. You can always quit if you don't like it.

-Moon

P.S. Here is a thread about magnesium and other supplements. It might be helpful to read.

http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=17096

[KatNapper]

I am 26 but I usually post on the main Narcolepsy board. If you hop over there you can see quite a few posts about Xyrem. I am a huge advocate for it. It has been a miracle medication for me and I am so thankful for it. If you search some of my posts from last year I described a lot of the side effects I had, but they were short term and all of them have either gone away or are very tolerable.

Like Sleepymoon says, if it doesnt work you can always stop taking it. Before Xyrem I took Provigil and the difference between the two is amazing. I dont need to take anything during the day at all, and I have so much energy now that I am even able to run these days! I love it!

[Sahhah3]

I'm 21 and have been on xyrem for a couple months now. I highly recommend giving it a try, I feel far more alert on xyrem than I ever did on ambien and provigil combo. I've had no side effects at all, but I work out and jog a lot so I sweat out most of the excess sodium. I have good and bad nights still, but overall my quality of life has greatly improved due to xyrem.

[kyethra]

I just started taking it a few nights ago. I'm 24. This morning I woke up and I was stunned. I was stunned because I woke up after 7.5 hours of sleep on my own, because I wasn't sleepy anymore. My alarm still isn't supposed to go off for another hour. It has been years since I have done anything like that and before it was only when I was on good meds for sleep. I was actually too awake to go back to sleep! Imagine I've also been staying awake more during the day I think. So far haven't noticed side effects, but I do plan on starting on magnesium with malic acid and potassium along with my multivitamin and calcium in a couple of days. I haven't been taking my flexeril with it at night because the pharmacist said that can lead to oversedation, but I do feel stiff and so forth in my legs and back (i have fibro as well as N) so I might ask about taking it with that or see about just switching over to baclofen (muscle relaxer that is less drowsy). But I also wake up now without neck pain. Without xyrem I sleep like I am possesed. In addition to my lack of REM paralysis I also do this really wierd repetitive head movement, from one side to center and back again. I wake up with hideous bed head and neck pain, surprise surprise. So far xyrem has been stopping that. I'm really looking forward to see how it can help me since I am going to grad school full time in the fall! I don't know if it is enough to get me off of provigil. I suspect I might need both. Maybe even something like adderal for bad days or ritalin too. We'll see. But I do know that with it I am beginning to think more might be possible.

[SleepingBeauty420]

I've been on Zyrem for about 5 months now. I had cataplexy pretty severely and eds pretty bad as well.
Positives: Cataplexy is ALMOST completely under control along with lexapro.
EDS is pretty inconsistent. I'm good one day and bad the next. I take provigil as well.

Negatives: I bruise so easily...it looks like I got beat up all the time. I sweat profusely. I've sleep walked 2 times now. I feel drugged up alot of times. Like I'm not all there...and of course I felt like that before with the EDS but its even worse now but not constant. I am VERY forgetful and scatterbrained. I get agitated real easy. I get depressed on and off. I'm thinking about taking a break. I've noticed also that I cannot sleep without Zyrem but still feel very tired during the day and alot of times each dosage will only knock me out for 2-3 hrs each dose and that isn't enough sleep, and the rest of the time I'll constantly be tossing and turning. Before when I'd sleep I'd get into the 2nd stage and stay there but now w/o Zyrem or when it wears off it doesn't even feel like i sleep...just like i close my eyes. I have no sexual desire whatsoever which is kind of stressful but not such a big deal at this point of time in my life..but I'm worried about the future. I don't wanna be dependent on this and I'm concerned about long term use. Anybody got some advice or experiance any/all of these things? I've talked to Neurologist and Zyrem and they both say the same thing " Talk to your doctor about that" Then the doctor says talk to Zyrem about that. Its come down to me and which would I rather deal with?

[sleepymoon]

Sleepingbeauty,

What dose of Xyrem are you taking and how long have you been at that dose? Did you have depression before you started Xyrem? I wonder if the fact you are taking Lexapro and Xyrem is causing you issues, but I have never taken antidepressants, so I know nothing about that. Have you read through the recommendations about taking nutritional supplements to counteract Xyrem side effects?

Moon

[meldoh]

I'm 25. I've been on Xyrem for about a month. At the max dose 9g a night. Cataplexy is almost gone. My daytime sleepiness has definitely improved but afternoons are unpredictable. I don't think I have any side affects. Does everyone go to bed so early? I have to go to bed at 9:30 and can't get out of bed until 7. I am so dizzy if I get up. Do you eventually get used to it and are able to stay up later? I feel like an old woman!

[kyethra]

well I've been on it a while now. I love the stuff! I am awake during the day, less provigil. I am getting things done! I feel like I have finally woken up. I actually now stay awake during long car rides, even if I am sort of sleepy! ITs worth it. No side effects for me.

[LauraSakura]

[sleepymoon]

[patient_54]