[pamela+simon]

Hi all

my boyfriend has had narcolepsy for the past 12 years and has been on modofinil for the past 10 years as well as dexedrine for the past 7 month.. He has just had yet another sleep study as he feels he is not sleeping on a night and his tablets are not working like they should aswell as excessive day time sleepiness he feels he has no energy through the day what so ever and it is ruin his life in the way he will not socialize and can not hold a job down..

After the sleep study the consultant said he appeared to have had a good night sleep and the day time tests he appeared to go into REM sleep quicky but all appeared ok when he was woken..
The consultant then said he thinks he has Hyper Insomnia instead of narcolepsy as he appears to be sleeping ok through the night ok but is lacking energy through the day.. sorry if this is all confusing but the consultant didnt really know what to do regarding this and basically just sent us away telling my boyfriend to try having naps through the day and has 2 days off his tablets once a week to see if they will give him the boost like when he first started taking them.. he also sent us away with Ritilin to try but i think he only did this as my bf was extremely up set that he couldnt do anything for him..
The doc mentioned trying xyrem and said he tought it would help even though he said my bf was getting good night sleep,we are applying for this and have a doctors appointment monday but as it is only for narcolepsy with cataplexy i dont think we will be allowed to try it.

Im just wondering if anyone has experienced anything like this or is suffering with Hyper Insomnia to give us any advice hints or tips or even a good doctor who can help.

hope this all makes sense there is so much to tell but dont want to go on too much. it would just be nice to speak to some one who can maybe help..
Thanks all pamela and simon xx