22 replies to this topic

[maxfan]

what are your feelings towards this medication?

i have only taken it a few times because i found it very difficult to fall asleep with the first dose, then i would pass out with the second dose. starting with the minimal dose, i would take my first, not sleep, then feel drunk until my alarm went off to take the second. i got less sleep than before, and ended up getting a kidney infection. combined with provigil, i was feeling ok until i got so sick.

[SLEEEPYSHEILA]

i take xyrem and i like it cause it well knock my lights out like a log but the first time i took it i was out with in 15 mints from the first bottle and to remind you i slept for like 4 hs and then i had to get up and take my last bottle it was around 12 r so and again i was out with in 15 mints from the last bottle and i slept the rest of the night did not wake back up til like 6 am. and i was ready to start my moring but my husband dont like it cause he has to go to the bathroom with me because im scard i will passout but im still num so i want fell nothing if i was to get hurt.. anyways this is the best sleep i have had in years but im like some of you i dont like it cause it has me breathing heavy now i would take these 30 mints power naps before i was on xyrem and to remind you i was takin ritilan 3 times a day and still was goin down for thoes 30 mints power naps but now im not napping much on thisone than i was when i was on the ritilan sleepysheila

[sleepysleepy]

I am having the same problems with Xyrem. I have been taking it for about 3 weeks now and they have adjusted my dose my 2.25 mg to 3.75 mg and it has helped a little but it still take me about an hour to fall asleep.

Has anyone else had similar issues? Does it just take time to get relief?

[Ronda]

Hi. I was only diagnosed with N 3 months ago. I started xyrem 2 months ago and had some trouble falling asleep at first, which was unusual because I usually am asleep when my head hits the pillow. I'm taking 3.75 and sleeping 4 hours and another 4 hours after the second dose. I feel sooo much better with this sleep. I only need one or two naps a day and I can actually function. I also take Adderall during the day, but I haven't needed nearly as much since the xyrem.

Not every night is perfect, but I think I am settling into a pretty good routine.

I hope things get better for you quickly.

[gladtoknow]

I only tried xyrem once and am considering trying it again (it's been almost a yr I think). The one time I took it, it took me about 45 min to fall asleep. my body was completely weak (couldn't move very well), had muscle twitches and within the 1st 15 min felt my body get REALLY hot and prickly. That lasted about 5 min and then went away. I slept for about 2 1/2 hrs. When I woke up, I was hallucinating - walls were rounded, trailing colors, etc. Didn't take the second dose. Slept for about 3 more hours. Then until about noon the following day my right arm was very weak (had alot of trouble lifting it).

My dr, the success program pharmacist and the xyrem mfgr pharmacist all told me that they we VERY unusual side effects (I took 2g dose) at any dose, but especially at such a low dose. They all said I could try it again - dr suggested higher dose to knock me out, pharms suggested same or lower dose but said I would still have same side effects just less severe. I've been too chicken to this point to try again. But the adderall (which is all I have found after 7 diff meds that helps at all) just gets me to functioning and I'm still not sleeping well at night....... so confused.

[Ronda]

I also noticed most of the side effects you mentioned, but the sleep and feeling awake during the day are so much better that I dealt with them. Now either I'm used to them or they aren't as bad. I know I do have muscle twitching in the evenings, but that's before I take the xyrem. My muscles are weak and I don't feel like moving them, but I'm in bed going to sleep, so it doesn't bother me. The hot, prickly feelings don't last long. I guess I'm just so happy to sleep that they don't seem so bad. When I sleep, I don't take much Adderall at all.

I really hope you are able to get some sleep. I had almost forgotten what it feels like to be awake, and I'm sure I'm not all the way there yet. Good luck!

[Ronda]

All meds have their ups and downs, and we still have N, but it's worth a try, and maybe it's worth a second try as well. Sometimes if one med doesn't work right off, it may work later. Good luck.

[kogeliz]

I find that if I don't take my Xyrem minutes before I lie down, I stay up a lot and eat everything in the house.

Otherwise, I'm out like a light....

I have trouble waking up for the second dose, though. I sleep right through the alarm.

[sleepyavon]

Xyrem has changed my life, when taken also with Effexor XR, I can laugh again and not fall down, amazing. Before, I was afraid to leave home ever, because the simplest emotions, even fighting a sleep attack would bring me to the floor often for more than a minute of paralysis. Also Xyrem has allowed me to sleep again for more than an hour and a half.

[Cryopathic]

I don't take Xyrem but Im thinking about taking it. Would like to know more before I take the plunge.

[Toph4er]

I only tried xyrem once and am considering trying it again (it's been almost a yr I think). The one time I took it, it took me about 45 min to fall asleep. my body was completely weak (couldn't move very well), had muscle twitches and within the 1st 15 min felt my body get REALLY hot and prickly. That lasted about 5 min and then went away. I slept for about 2 1/2 hrs. When I woke up, I was hallucinating - walls were rounded, trailing colors, etc. Didn't take the second dose. Slept for about 3 more hours. Then until about noon the following day my right arm was very weak (had alot of trouble lifting it).

My dr, the success program pharmacist and the xyrem mfgr pharmacist all told me that they we VERY unusual side effects (I took 2g dose) at any dose, but especially at such a low dose. They all said I could try it again - dr suggested higher dose to knock me out, pharms suggested same or lower dose but said I would still have same side effects just less severe. I've been too chicken to this point to try again. But the adderall (which is all I have found after 7 diff meds that helps at all) just gets me to functioning and I'm still not sleeping well at night....... so confused.

My experience was much the same except it was the third day that I got the numbness + other weird effects. The first night it just wired me and I could not sleep...the second I only slept from exhaustion...then the third >.< but that's not to say I would discourage others from trying it. I don't think anyone should fear trying it...I survived my bad reaction and the only deaths that have resulted were from severe overdoses combined with some other stuff they took, so if you are responsible your only worry is temporary discomfort if you are like us wierdos in which case you can consider discontinuing it.

Chris"Toph4er"

[Tired Blue Eyes]

i take xyrem and i like it cause it well knock my lights out like a log but the first time i took it i was out with in 15 mints from the first bottle and to remind you i slept for like 4 hs and then i had to get up and take my last bottle it was around 12 r so and again i was out with in 15 mints from the last bottle and i slept the rest of the night did not wake back up til like 6 am. and i was ready to start my moring but my husband dont like it cause he has to go to the bathroom with me because im scard i will passout but im still num so i want fell nothing if i was to get hurt.. anyways this is the best sleep i have had in years but im like some of you i dont like it cause it has me breathing heavy now i would take these 30 mints power naps before i was on xyrem and to remind you i was takin ritilan 3 times a day and still was goin down for thoes 30 mints power naps but now im not napping much on thisone than i was when i was on the ritilan sleepysheila

Hi SLEEPYSHEILA,
Not sure if your still on this medicine but I just had a few questions if you can anwser them. You mentioned something about being numb, can you explain that alittle more? Also doesn't that have the date rape drug in it? And if your still on it has it changed your awakeness any? Thanks so much, Kathy

[kogeliz]

Well,
Xyrem is meant to take while you're already in bed or about to go to bed.
It no doubt causes you to feel super tired and someone intoxicated. I guess that can be scary for some people at first.

For people with cataplexy, this is basically the only medication out there to help treat symptoms.

I encourage anyone who is interested in this medication to take a look at their website for more information:

http://www.xyrem.info/html/main.isx

[sleepysleepy]

I find that if I don't take my Xyrem minutes before I lie down, I stay up a lot and eat everything in the house.

Otherwise, I'm out like a light....

I have trouble waking up for the second dose, though. I sleep right through the alarm.

I too stay up alot and eat everything in the house. I just call the pharmacists at the Success Program and he said he had never heard of that happening to anyone. I thought he was crazy because I've heard of it happening to other people. I just want to know how to control it. The joys of N!!

[sleepyavon]

Hi, this is what I wrote as a PM to a fellow board member.

I have several conditions too: Narcolepsy-- full tetrad, RA, and Fibromyalgia. I am also on lots of meds. The wonder drug you are describing is called XYREM, and yes it is GHB and is highly controlled. It has been a miracle for me, I can laugh without falling down now when I take Xyrem with the anti-depressant Effexor XR daily. Xyrem really helps control cataplexy, SP, HH, and really helps consolidate and improve the quality of our sleep. If you are waking up alot... fragmented or disrupted nightly sleep... and esp. if you have cataplexy problems, I beg of you to at least try it, esp if you have insurance coverage. Even if you don't you can get Xyrem Patience Assistance through NORD, I did for about one year. I am on a high dose and take it 3 instead of 2 times a night. You do wake up midnight to take your second dose, but the quality of sleep has impoved beyond measures. Now, yes, it can make you feel numb, and you can have trouble walking around AFTER you take it, because it is a CNS Depressant... like getting drunk. That's why the doctor Always advises us to Not take Xyrem unless you are Already in bed, and not to leave the bed right after taking it. Xyrem works very quickly and puts us right to sleep, a very deep.. stage 4 sleep for me- when our bodies repair themselves the most. I know the constant tired feeling... it and allover excruciating body pain are my life. I do get joy from my husband, Ken, being Your SLeepy AVON Lady, and educating others about disabilities and how society needs to become more aware of our plight.

[2Tired4Life]

THIS CARTOON IS SO CUTE! (How can I get it to put on MySpace?)

[bunny]

THIS CARTOON IS SO CUTE! (How can I get it to put on MySpace?)

[bunny]

THIS CARTOON IS SO CUTE! (How can I get it to put on MySpace?)

I'm new so I hope I am replying correctly. I nearly died on xyrem. I called the xyrem pharmacy to ask questions about how I felt the first day. They told me to call back in a week. I called again in a few days and again was told to call back after a week. I called my sleep doctor. I was so dissasociated he thought I was my sister. I don't have a sister. He said to call back in a week. He thought the phramacy knew what they were doing. I called my primary care doc for help. I was suffering from low potassium. His office staff didn't think it was important enough to tell him how bad it was. I had so much physical pain with the xyrem and I didn't feel like I ever fully woke up. Finally at the end of the week my husband took me to the hospital. I was psychologically impared. My potassium had fallen so far we thought I was having a heart attack. I had seizures for nine hours. My blood pressure fell to 40/30. My pulse was 170 plus. My breathing was down to four breaths per minute. My husband sat with me 24/7. I was experiencing dreams or hallucinations or God know what. It all seemed so real. After nine hours of suffering the hospital finally gave me some ativan and potassium. I was tranfered to the regular part of the hospital. My husband said I reverted to a baby and had to grow back up. I don't remember that part. The pharmacy was of no help. The hospital never even called my sleep doc. After two days I was transfered to a psychiatric hospital. The psychiatric nurse and doc said I did not belong in a psych hospital and appologized for what had happened to me on the hospitals end. This happened in 2006. It took a long time to recover physically from this. Mentally, I still have problems, between how helpless I was and how near death I came. On top of all this my primary doc dumped me for complaining about his staff and his decision to send me the psychiatric hospital. This stuff may help some people, but sending it out without real supervison is dangerous.

[Henry G]

I wish I could have a go with Xyrem.

[daffodil]

I started xyrem last week for EDS.  I also have fibromyalgia.  The first two nights I felt great.  I fell asleep quickly, woke up just before the alarm, and was able to get up before 9 am for the first time in years.  Since then, I have been having a similar experience to many of you.  I do not fall asleep after the first dose.  I feel relaxed, and a little drunk, but energized.  And HUNGRY.  And then I take the second dose 2-1/2 hours later and fall asleep for about four hours.  During the day, I have been more active then ever, getting stuff done that would have taken me months to do.  And the fibro pain has all but disappeared.  I do feel anxious/unsettled all day, similar to the way I feel when I stopped taking my trazodone, but I am still taking the trazodone too.  I think that if I increased the dose, I might be able to sleep after the first one but my sleep doctor is out of the country.  I also have been feeling more emotional than usual.  I feel like an old toy that had been forgotten about on a shelf that has been taken down, dusted off, and had the batteries changed.  It is a shame that I have to start on treatment for my hepatitis C next week which causes some nasty chemotherapy-like side effects for almost a year.  

My dreams have also gotten more vivid, but they have become more like watching a movie than having an experience.  I have not noticed any hypnagogic hallucinations or sleep paralysis since starting it.  Overall I am impressed, and I think I will continue.  It is giving  me  a constant headache, though.