I was diagnosed with FMS about a year ago (symptoms appeared at age 15, now 30) and narcolepsy about 6 months ago (symptoms appeared 8 years ago). I've also had headaches for 8 years and no one can figure it out. However, I just don't ever feel like I will have any relief! I've been on Provigil since my diagnosis but now I am sleeping through my alarm and the dog jumping on me. Every time I see my Rheumy or Sleep doc I feel like they don’t truly understand.
When I do finally wake up in the morning I am exhausted and I fight the urge to sleep all day. Short naps don't work because I wake up more tired. I want to sleep for hours and hours but no matter how much sleep I get I'm still tired. I know I should go to bed and wake up at the same time but when I'm so tired it is really hard. For example, this weekend I woke up at 9:00 am on Saturday. I went to bed at 11:30 pm. I was only up for 14-hours. Sunday I woke up at 6:00, took my Provigil, and went back to bed until 9:00 pm. I was passing out (head-bobbing) at 6:00 pm. I went to bed at 7:30 pm (only a 10.5 hour day) and slept until 6:45 the next day.
Yet everyday I wake up tired, regardless of 4 or 14-hours of sleep. I don't really have any other symptoms besides being able to fall asleep in about a minute and having vivid dreams as soon as I fall asleep. If I'm awoken shortly after I fall asleep I can sometimes remember what I was dreaming about. If not, I don't ever remember my dreams.
I've had all the sleep studies, wakefulness tests, etc. Is there any other help for me out there? It is beginning to get me depressed and I feel like doing anything, let alone working. I feel like sleeping is the only time I’m not suffering from something.
Any advise? Is this 'normal?'
I Just Don't Get It!
Started by
Betsy
, Jun 18 2008 01:57 PM
1 reply to this topic
#2
Mike M
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Posted 19 June 2008 - 12:20 AM
Betsy,
Do you take anything at night? The AASP's standard treatment guidelines are Provigil and Xyrem. The Provigil helps to keep you awake, but narcolepsy's core issue is that we don't get enough stage 3/4 sleep during the night. Xyrem (and other sleep aids, I think) help us to have a more fulfilling night's sleep. Thus, we are more rested during the day and less prone to EDS and cataplexy. As with any drug narcoleptics experience a wide range of "success" with Xyrem, but most get some benefit from it. Some narcoleptics need no stimulants because the Xyrem works so well. I know Xyrem helps me some, but I am still tired during the day even with my 50 mg of amphetamine (Provigil was very bad for me). I hope that info helps. The other thing that my doc suggested for "getting up" was an low dose, extended release stimulant in the middle of the night. When I take my second Xyrem dose at 1 AM, I also take a 10 mg methylphenidate tablet. I still struggle to get up most days, but I make it all of the time, which was not the case in the past. Good luck!
Mike
Do you take anything at night? The AASP's standard treatment guidelines are Provigil and Xyrem. The Provigil helps to keep you awake, but narcolepsy's core issue is that we don't get enough stage 3/4 sleep during the night. Xyrem (and other sleep aids, I think) help us to have a more fulfilling night's sleep. Thus, we are more rested during the day and less prone to EDS and cataplexy. As with any drug narcoleptics experience a wide range of "success" with Xyrem, but most get some benefit from it. Some narcoleptics need no stimulants because the Xyrem works so well. I know Xyrem helps me some, but I am still tired during the day even with my 50 mg of amphetamine (Provigil was very bad for me). I hope that info helps. The other thing that my doc suggested for "getting up" was an low dose, extended release stimulant in the middle of the night. When I take my second Xyrem dose at 1 AM, I also take a 10 mg methylphenidate tablet. I still struggle to get up most days, but I make it all of the time, which was not the case in the past. Good luck!
Mike
