Prior to my diagnosis for as far back as I can remember I had trouble staying awake during the day, while driving, while reading, while sitting in church, while at work. I remember having difficulties waking up in the morning. At least I think I remember all of that. I know I remember some of it. My memory is very spotty though, especially that long ago. So I don't honestly know for sure how bad my sleepiness was during my late teens and early 20's. I'm fairly certain it was pretty bad though.
After my diagnosis I started taking medication to help me stay awake. First it was Provigil. Provigil worked but at too high of a dosage. Next in line was Adderall. Adderall didn't work very well so my sleep doctor had me try Concerta. Concerta worked and so I started taking that every day to help me stay awake. It worked decently well, and I could clearly tell how well it was working by how bad my daytime sleepiness was when the Concerta wasn't in my system. After some time I lost insurance due to my employment situation so I started rationing the Concerta I had left, taking it only on the days I had to work (and thus drive). The other days of the week I attended my college classes, and slept through the majority of most of them. I never consistently got 8 hours of sleep during any of this time. Average was probably 6 hours per night during the week, and 8-12 hours per night on the weekend. After some time I was able to get insurance again and went back on Concerta on a daily basis. At some point I then switched to generic Ritalin, I think due to the cost of the Concerta (my insurance copay was rather pricey). Methylphenidate worked pretty well for me too, I just had to take it more frequently throughout the day. It gradually lost its effectiveness on me though. Early this year I was taking 90-100mg per day, and still having severe difficulties staying awake at times during the day at work, and at times during the drive to and from work. Average sleep times stayed about the same - 6 hours/night during the week.
My sleep doctor had me test Xyrem earlier this year. After a week or two I started noticing a difference in my daytime sleepiness and was able to start decreasing my methylphenidate intake, and then stop taking it virtually altogether. It was absolutely amazing what a difference the Xyrem made for my sleepiness. My average sleep amounts increased around this time, averaging 7-8 hours per night during the week.
Almost one week ago I stopped taking Xyrem. I have now made it through 6 complete days, Xyrem-free and methylphenidate-free. I have not fallen asleep while driving to or from work. I have not fallen asleep at work. I have been sleepy at times while driving and while at work, but nowhere near as bad as the extremely severe sleepiness I still recall quite vividly.
I am thoroughly confused as to how this is possible. Everything I know and remember about my past and my narcolepsy indicates to me that I should now be experiencing extreme daytime sleepiness. But I'm not. I'm flabbergasted. I cannot think of any logical reason to explain why I'm not being afflicted by my old EDS. Do I no longer have narcolepsy? If I don't, when and how did it disappear? Did I ever have narcolepsy? Or was it all in my head? I know it wasn't in my head. It was far too real and far too severe for it to be a product of my imagination. Do I still have narcolepsy and it's just biding its time to start acting up again? Will I find myself once again struggling to stay awake on the drive in to work tomorrow? Will I find myself nodding off at my desk throughout the day, desperately fighting to keep my eyes open and to fight off the heavy fog trying to smother my brain? Or is all that a thing of the past now?
I'm so confused about all of this!!!
