Reply To: Coming off of Xyrem severe rebound insomnia HELP

Index Support Center Forums Treating Narcolepsy Coming off of Xyrem severe rebound insomnia HELP Reply To: Coming off of Xyrem severe rebound insomnia HELP


HG Mag Pie,
I have been dealing with my Narcolepsy WITH Cataplexy for 15 or so years now and have at one point been on every combo of meds to help. Firstly, I don’t know why your doctor would put you on Xyrem, it is primary used to combat the Cataplexy. So if you don’t have Cataplexy, I wouldn’t even bother taking it. I don’t even use it anymore, because it was causing me to go into more paralyzing attacks then without it. Have you tried cutting your adderall to just “Take when Needed”. I was probably averaging 2hr night when I took it every day. If you stop your adderall cold turkey, you will start sleeping the next night and pretty much the next 2-3 days. Once you get that few days to absolute tiredness out of the way, use the adderall only when you absolute need it. Don’t stop your benzo’s though. But you also might want to try to cut down that dosage also, sounds like you have a high tolerance with them. Trust me, I know how hard this is to live with. You have to constantly adjust your sleep habits. I’m happy if I can a straight 3-4 stretch of sleep at night. You might want to try herbs like melatonin, valerian Root, Chamomile, passion flower….CBD has really helped my with my sleep. I use the CBD vape juice every night before I go to bed and that has really helped me sleep a few hours strait every nigth. I would wake from my sleep easily 1-2 every hour during the night, so If I was in bed 8 hours I would actually only get like 1-2 hrs of real REM sleep. Best advise I can give you is to try different things and you will eventually find different routines and Natural Herbs & Med Prescriptions that work for you, and adjust when you need to. If you doing good, cut down if your having a bad few days or week, up it a little. I wish we could just take a pill a day and it would go away, but this is something that you have to make part of your life. And nobody understands how hard this is to live with…your ruins alot of lives, especially people who have it so bad they can’t get it under any kind of control. So just hang in there, try cutting out the adds for a bit, don’t try and sleep if your not tired, No tv phone etc when you lay down. You also may want to consider a different Sleep Doctor or you can also go to a Neurologist. Good Luck.