Questions & Answers

I have recently been diagnosed with narcolepsy without cataplexy. I'm on Adderall 30 mg 3x daily. I've noticed if I don't get a good 10-12 hours of sleep, my Adderall won't work as well. I still have severe brain fog, embarrassingly amounts! I have nightmares so realistic I have to go check on my family. My doctor said he doesn't want me on either med typical for narcolepsy as it can cause Steven's Johnson syndrome. What can help with this? Medicine or otherwise. Thank you
Miranda Dodd
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Does anyone feel embarrassed by having narcolepsy? It use to bother me really bad. I accepted it a few years ago & was able to finally talk about it…now that people see that I’m more active than I use to be & try to depend on me to do things on time is starting to really bother me again

For having narcolepsy with cataplexy, I always fall asleep VERY easily but I wake up a dozen times a night & have trouble getting back to sleep. WHY?? I never have a day that I feel 100% fully rested.

I currently take Modofinal. Some times it works very well and sometimes I am not sure. When discussing this with my doctor, he asked me if I wanted to try the above (he told me the name but I can't remember it). He thought it might be helpful for me. Only one place that it is filled and sent out from?, that sounds a little scary to me. I have been thinking about it because I am tired of falling asleep all the time. It is embarrassing. I have been tinkering with the timing of the two to… read more

I have been on Modafinil for over a year. My doctor finally sent me to a sleep specialist and I will have my sleep study and mslt in a couple weeks. I never feel fully rested, but there are some days that I can’t go more than 2-3 hours without a nap. I get very drowsy and my eyelids get heavy. On my bad days, this happens every 2-3hrs all day long.

I have a lit of symptomsit is driving me crazy

This isn't persay a question I'm just remembering and venting. Maybe you guys know what I mean. So of course if I got scared like our dog running towards me .I just would faint. If a friend was picking me up and moveing me around her waist .I would loose muscle control and drop. When that happens how weird to feel your body move and couldn't do I thing about it. My family would always find me outside and I would be out. They would bring me in and lay me down until I woke up. I was told one time… read more

Does anyone know if people in the us can receive disability from social security for narcolepsy. How do you find a job that lets you sleep on the job?