11 replies to this topic

[wendiesel]

I have a doctor's appointment on Monday, Oct. 15. What side effects or problems have you experienced with Xyrem? What benefits have you experienced? I am not for sure if this drug is for me.

[supercat]

I know someone using Xyrem. She doesn't feel it's as effective anymore. The medication is also know as GHB "the date rape drug". You have to obtain it from a special pharmacy, through the mail I believe. You take a dose before you go to bed and set the alarm after a couple of hours and repeat the dose.

Good luck with your doctor's apt. Are you currently taking any other medication/s?

[wendiesel]

yes, I am currently taking dexedrine twice a day, but nothing for my cataplexy.

[yanita]

Hi:

Sorry I am unable to help I take a nother medication..Good luck in your Dr's appointment.

Yani

[Zzzoe]

I've been on Xyrem for over a year. It has changed my life. I couldn't tolerate stimulants and my EDS had progressed to an all time high. I couldn't even watch an hour of TV without falling asleep. It was getting to the point where I thought I might lose my job. I was also in constant discomfort and pain from associated fibromyalgia. I had fought my doctor about trying it for 2 years and then finally had to give in out of desparation. It worked from the beginning with very little side effects and adjustments. There are no residual effects during the day for me. It clears your system in 4 hours. That is why you dose 2 times a night. I now sleep soundly without that sleep/wake limbo I've experienced all of my life. The only negative is that I have dropped a lot of weight. It does seem to affect your appetite, but it seems I'm not gaining weight even when I make an effort to eat more. My fibromyalgia is in check also. I strongly believe it is a consequence of years of non-restorative sleep. I also have Apnea and I am still able to take Xyrem as long as I am on CPAP. I would advise anyone to give it a try. It treats the problem, unlike the other drugs that treat the symptoms.

[ATampaNarco]

8) I HAVE BEEN ON XYREM SINCE APRIL. I LOVE IT. THE MEDICATION HAS TO SOMETIMES BE ADJUSTED, BUT WHAT MEDICATION DOESN'T? IT IS GREAT. YOUR FRIEND MAY NOT BE RECEIVING THE PROPER MEDICAL ATTENTION IN COORDINATION WITH THE XYREM? GIVE IT A TRY! IT IS FAST ACTING AND SHORT LIVED.

[aimeemerr]

I have been on xyrem for about 6mos - previously tried stimulants that worked some but had awful side effects. Xyrem has made my life the best it has ever been!

[Andrea Egan]

I have been on xyrem for over 1 1/2 years. Although I personally have mixed feelings about it, I believe xyrem is one of the best medications currently on the market for the management of cataplexy in narcolepsy. Zoe, contrary to what you may have been told, xyrem does not directly treat the problem of narcolepsy. In order to do this, we would have to put cells back into the hypothalamus of the brain.

Side effects of xyrem are generally mild and usually subside within an hour of waking. The only side effects I've experienced when my dosing was correct were dizziness and nausea. These only lasted for about a week until my body got acclimated to the drug.

It has greatly reduced my cataplexy to one or two episodes a month, rather than over 20 every day. I have not found it helps much with EDS (I have more moderate narcolepsy) and I do take stimulants (Ritalin 20 mg 2x/day) in addition to xyrem. Remember that xyrem is a "build-up" drug. It's going to take months of continuous doses before you'll see an improvement in wakefulness during the day. This can be very frustrating, but hang in there. I sank into a depression and became suicidal the months following my diagnosis (before I was put on Ritalin). We are so used to expecting that when we take medication for something, it is going to produce immediate results. It may make you feel sick for a week and not any less "zombie-like" for awhile, but stick with it. That will pass; you're in this for the long haul.

To combat the unpleasant (very salty) taste of the drug, try mixing with sugar-free kool aid in a greater concentration than you would normally use (because you're going to dilute the mixture further when you add the liquid xyrem and the more "fruity" taste will help mask the saltiness of the xyrem). I use crystal light (raspberry lemonade), although be warned: it's like making kool aid with salt water--it's still not going to taste good. I find it best to plug my nose and gulp it down as fast as possible...

Another tip: you may need multiple alarm clocks. Some people wake up naturally when the first dose has worn off, but others sleep right on through and turn their alarm clock off in their sleep, only to wake up hours later and realize it's too late to take their second dose.

NEVER, I repeat: NEVER take xyrem if you're not tired. It will not put you to sleep. You will lay there fully conscious but unable to move or speak. This is a mistake you only make once. Something that goes along with this is to try to sleep on your side and avoid using multiple pillows. If xyrem begins to take affect before you fall asleep, your body will go limp and you won't be able to reposition yourself if you want to. I've had it where my head was not stable and rolled into the pillow while I was awake, which made it very difficult to breathe! I thought I was going to suffocate and could do absolutely nothing about it! (This is why I do not like this drug).

I do not mean to scare you. This is a very safe drug when you know how to use it correctly and know how it will affect your body. Having someone you trust there to keep an eye on you when you first start taking xyrem is a big help and also creates some sort of peace of mind.

[2tiredalways]

I AM CURRENTLY ON PROVIGIL & RITALIN.
I WAS TAKING AMPH. SALTS FOR ABOUT 8 MONTHS BUT WAS HAVING RAGE ISSUES.
ABOUT 2 1/2 YRS AGO I TRIED XYREM.....I WAS OK 1ST COUPLE OF DAYS BUT AS TIME WENT BY I WAS FEELING DIZZY AND HIGH DURING THE DAY WHICH KEPT INCREASING IN INTENSITY.
THE LAST NIGHT I TOOK IT I WOKE UP 1 HOUR INTO IT AND I WAS
SOOO SICK. IT FELT AS IF I HAD SEVERE ALCOHOL POISONING AND I TRUELY THOUGHT I WAS GOING TO DIE.
I COULDNT MOVE..AT ALL. I COULDNT SPEAK TO CALL MY SISTER WHO WAS IN THE OTHER ROOM. SHE HEARD MY WHIMPERS BUT DIDNT KNOW WHY AND FELT SINCE SHE COULDNT HELP SHE DIDNT COME INTO HELP ME!!
I LAID THERE FOR 3 HOURS PARALIZED WHILE I TRIED TO GET AIR IN MY LUNGS AND THE BED SPINS WERE LIKE NOTHING I HAVE EVER COME CLOSE TO EXPERIANCING.
I WAS TOLD AFTERWARDS THAT WAS BECAUSE THE XYREM WAS NOT LEAVING MY BODY LIKE IT SHOULD AND IT WAS ACTUALLY STAYING IN MY SYSTEM. THE RESULT I OVERDOSED ON A SMALL AMT THAT I ONLY TOOK FOR 2 MONTHS.
I AM GLAD IT HAS HELPED SOME PEOPLE...HOWEVER I WOULD NEVER EVER RECOMMEND THIS DRUG TO ANYONE.
SO EVEN IF U TAKE IT WHEN U ARE EXAUSTED AND READY FOR BED
YOU CAN STILL WAKE IN THE MIDDLE OF IT.
SORRY TO BE A DOWNER BUT IT WAS TRUELY THE SCARIEST THING I HAVE EVER EXPERIENCED.
I HAD A HARD TIME BREATHING

[Zzzoe]

Andrea, what you are reffering to is a "cure". When I say it treats the problem, I am referring to the fact that it allows some of us (like myself) to get restorative sleep. Therefor every aspect of my wakeful life has improved. This includes the discomfort and pain I experienced from fibromyalgia. I am now remaining awake on my own "because I have actually experienced the proper stages of sleep". This is a complete difference from trying to artificially stimulate my mind and body after constant inadequate sleep. I am far from the energetic person I would like to be, but I am very happy to be this improved. My cataplexy has always been mild and I don't take anything else for my narcolepsy, maybe that is why I have never had any kind of paralysis while on Xyrem. I have had to awaken at many different stages after taking it over the past year and I am groggy but I can think, move, and function. The more you have to get up and move around, however, the more nauseous you will get. I have had emergencies happen and have been able to respond, the consequence was some severe nausea until I could fall back asleep. I'm not saying I can do too much, halfway through a dose, but I can answer a phone call, make a phone call, or get out of the house if necessary. Without fail I fall asleep within 15 to 45 minutes after taking my first dose and it feels about the same as if I had taken any effective sleep aid. I would like to emphasize the importance of not eating near bedtime. This does greatly reduce the effectiveness.

[SleepyMeg]

Hi,

I'm 26. I currently take Provigil for my N. I tried Xyrem off and on for several months and finally decided that it wasn't for me. Here's why...

For one, the medicine really messed with my body. My skin broke out. My lips dried out and cracked. My stomach was upset most of the time.

Another reason I put the Xyrem aside was what happened after I would take a dose. There were several times when I would awake prematurely. Still under the influence of the drug, I would have what I can only think to call a panic attack. I couldn't move or I would feel like throwing up. I would sweat and cry. It was awful. I felt as if I was unable to breath, and all I could do was lay there and cry. My sweet husband got very used to soothing me with a back rub until I fell back asleep.

Finally, I've only known life with N, so the change in sleep was very hard to adjust to. I know this probably sounds a little crazy, but I missed the vivid dreams and creative ideas that came from N sleep. I also HATED the fact that I would take the drug and then wake up three hours later with absolutely no recollection of the time that had passed. When you take Xyrem, you are completely knocked out. It's a little bit scary, and I had a hard time adjusting to this.

OK, now that I've said all of the things I struggled with, I'd also like to say that I had more energy than I've ever had in my life while I was taking Xyrem. It's incredible, which made giving it up a very hard decision. I finally had to weigh the pros and cons, and I felt it was more trouble than it was worth. I just want you to know that I definitely didn't find it to be all bad. I just never could adjust.

I wish you the best. I hear amazing things about how Xyrem has changed lives for the better. I hope your life can be added to that list.

Best,
Megan

[flipflop]

My doctor has suggested that I try Zyrem and I go back to give him a yes or no answer in december. Some nights I sleep ok and other nights I do not sleep at all. I think I am going to try it. If I do not like it I can always stop. I will post again after I have tried it!