Nicole Lopes, 37, narcoleptic, tells iSleep about the improvements felt with therapy and the right medication.
“I used to say: people spend one-quarter of their lives sleeping, but I spend only one-quarter of it awake. Today everything is very different. 24 years later and medicated for 11 years now, I almost sleep one whole night, as opposed to the 3 hours I used to sleep before, at best. Nightmares and hallucinations (tactile and auditory) are gone, cataplexy crises are rare, but the wish to fall asleep and no to wake up anymore still haunts me sometimes. The situation is still not ideal, but I now have the hope for a normal life. I started to feel less “zombie” and more able to do more things during the day, I have lost some weight and I am no longer that much concerned about what people think.
If I could leave a message to the relatives and friends of people with narcolepsy, it would be asking for their understanding. Not to joke about sleep or the associated weight gain, not to judge, not to give suggestions as if they knew what we are going through, but accepting that the person evolutes according to his or her own rhythm.
For narcoleptics, my suggestion is that they keep very regular schedules every day and don’t be ashamed of taking planned naps during the day. It will certainly be very difficult, but it will be worthwhile in the long run and help regulating sleepiness. Professional help is essential for the effective treatment of this disease.”