I’m new to the group hoping to find support and understand what Narcolepsy is. I haven’t been officially diagnosed and trying to understand why. Last year I had a two day sleep study. The results came back that I have Sleep Apnea. The second part I apparently have Narcolepsy but my doctors for some reason haven’t officially put it on paper. I’ve been on disability since March of this year because at work I was falling asleep without warning. The day I was going to return to work I was laid off. I’m currently on Provigal and a month ago Adderal. The Adderal didn’t help so I stopped taking it.
I’m terribly frustrated because I’ve hit a wall with no diagnoses, no medication and no follow ups with my Neurologist. Last week I spoke with his nurse letting her know I stopped taking the Adderal and I need to discuss with him do I or don’t I have Narcolepsy. I got to get back to work.
Hi Leanne, I'm glad you've found the Provigil helpful. Are you treating the sleep apnea? Some people have both narcolepsy and sleep apnea, and if you do you're probably accustomed to a level of sleepiness and perhaps other symptoms that can be treated. After a diagnosis it takes time to work out a good treatment plan. Have you made another appointment with your neurologist? When you do, you might also ask if your doctor refers patients with sleep apnea and narcolepsy to sleep specialists. There might be some in your area.
Welcome Leanne, the beginning is very hard but like Carol said it takes time to find the right treatment plan narcolepsy affects each one of us in different ways, and please please find you a sleep specialist to go to in your area. Best of luck to you.
Hi what are you symptoms? The ER neurologist thinks I have narcolepsy. I am having a sleep study done July 29th and 30th