After many years and many more test I was diagnosed with N a little over a month ago. I am still finding it hard to believe that I actually have Narcolepsy; I always thought that was for people who fell asleep mid sentence (which I guess can be true). Every time I convince myself I am just overreacting I quickly remember my MSLT said I fell asleep in less then 30 seconds in 4 of the 5 naps (even though I was sure I never fell asleep during any of the naps) and I had REM sleep in 3 of the 5. So, I'm coming to terms with it. Even though I was somewhat glad to finally have a name for why I have been tired for the last 10 years of my life, I am pretty freaked out that this is my reality and it's not going to just go away.
My Dr. started me on 150mg of Nuvigil, the day I got the results of the MSLT, which has been a struggle. Like most people I had awful headaches for the first few days but pushed through, hoping this would be the answer. The headaches went away and for a few days I did seem to have more energy. Slowly I began to notice, after the first couple of hours (sometimes longer), I started having more sleep attacks and cataplexy episodes. The other day I went for a hike with some friends and when we got back and sat down for brunch I was so tired my eyes were crossing in the middle of eating and talking. I had a cataplexy episode and nearly fell out of my chair. I also noticed when I went for a run the other day I barely made it in the door before I was on the floor and I slept for about half an hour. I thought these things would go away when I started Nuvigil. I started taking Ambien CR which has helped. I don't fall asleep and immediately wake up again and again when I take it, but I know it isn't a permanent solution.
The biggest struggle for me is getting out of bed in the morning. I usually get up 3 hours before I have to be anywhere so I can be alert enough to carry on a conversation. I was really hoping the Nuvigil would help me wake up but it really hasn't. I really don't think I could take a higher dose because it already makes me feel a little weird in the head. Most of the time I feel like I'm detached from the world and I'm beginning to lose motivation and interest. Sorry this is a little random, I have so many things going through my mind and so many questions it's hard to make sense of it sometimes. I can't imagine being on this medication forever. Does anyone know of anything that has helped to get out of bed in the morning? I would appreciate any advice. I'm already very thankful I found this network.