The doctor calls me in the office, sits me down and goes over the sleep study for about five minutes and tells me I have Narcolepsy. I thought my Sleep Apnea machine had a problem. I really wasn't expecting to hear Narcolepsy although I knew there was some issues with my day study. I thought I was tired because of Sleep Apnea.
I was in shock. The doctor asked if I had any questions. How could I when I thought all Narcoleptics fell asleep mid sentence, and couldn't drive? I don't fit that description.
So he gives me a prescription for Nuvigil and Xyrem and sends me on my way. It didn't take long for the Xyrem people to start calling anxious to get me set up on their drug that wasn't available at my local pharmacy.
So I called and asked for another doctor. He was nicer but had little else to offer more than the drugs they prescribe. I now and waiting to work with new neurologist.
I would like to ask people here do they have a doctor that teaches them how to live with Narcolepsy? or do they just prescribe medicines and send them on their way?
My biggest issue is how to deal with brain fog; staying alert during meetings; diet; focus; fighting to get out of bed, etc.
Since I refused Xyrem because cost was so high and Nuvigil turned my life upside down, I am back to square one. My best drug is Asphalt 7 racing game on my iPhone. It does better than caffeine most of the time. The only problem is I get lost playing it and can't get back to work.
Without Narcoleptics speaking out about their symptoms I would not believe I have narcolepsy. However, after reading posts on hear I am sure I have Narcolepsy.