Mom,

I couldn't believe this when I read it. (I am new to these forums - here for my own PCS - but looking around and found your post.) You are describing exactly what my husband went through for six years. We have never found anyone else with this kind of sleep problem. He tried every kind of natural and pharmaceutical sleep aid, acupuncture, therapy, etc., actually had a first sleep study where the info was missed, then finally a second where they saw those results and was put on Xyrem. Same issues had happened for him: he was falling apart, there were days I had to drive him to work he was so sleep deprived and unsafe, he developed fibromyalgia, he literally barely slept for 6 years. Needed stimulants to function during the day (although he couldn't nap otherwise anyway). I am so sorry you went through this also and that this was so hard on your marriage. I understand completely. It is hell for the person suffering it. Sleep deprivation is literally a form of torture.

Xyrem works for sleep. It has had a lot of very difficult side effects that have been hell for my husband, but I don't know if that happens for everyone. Did you try it? How has it been for you? For him, the one really huge side effect, which is widely known for Xyrem, is the depression. And it was really bad. He tried and was unsuccessful with almost every type of antidepressant and mood stabilizer to combat it until finally Latuda worked somewhat (not great). It was still a big problem for a couple years. Just a couple months ago after a lot of difficulty with that (he wanted to stop the Xyrem, but I was really opposed to that), the doc has played with his dosage and timing of the Xyrem so that the depression is greatly improved and he is getting less sleep but still enough to be healthy and function.

I would love to hear from you. I hope you have had luck with this and not difficulties, but if you have, please share them. I know for us, this has been so frightening because no doctor has been able to help and it has felt hopeless. You are not alone.

Julie