I am writing a report for my school newpaper about living with narcolepsy. I have narcolepsy w/o cataplexy for 6 yrs but I wanted anther view point. If any one has anything they think would help like survival tips or anything just comment.
I have lived with narcolepsy for about 15 years without even knowing what it was. I thought that it was just insomnia and because I havery a brain that never slows down. I have mild cataplexy which has reared its head at the weirdest times. I also have excessive daytime sleepiness (EDS) which means that all day I am tired and if I give myself the chance I fall deep asleep. So deep that a raging party could go on and I wouldn’t hear it. Before I got diagnosed it got to the point that every point of my life was affected. I ended up quiting my job because I couldn’t focus and lack of sleep made me very anxious. I quit leaving the house because of panic attacks and being so sleepy. Finally got help from doctor and I am on the road to getting to where I want to be. Before I went to the doctor I dealt with sleepiness with copious amounts of caffeine and loud music. I didn’t even know anything about narcolepsy until I was diagnosed. I don’t know if this helps you at all but if you have any questions I will be glad to try and answer them.
I also have EDS, I have my own ways of dealing with it but i'd love to hear some alternatives for the article.
I was diagnosed with Narcolepsy and some mild cataplexy about 8 years ago.I also have ADHD. The Narcolepsy has definitely affected all areas of my life. People think that I am just lazy and don't understand that I would love to get up and do, but some days and especially without meds, my body just wont let me.
I timed many naps and they averaged 44 minutes, so I set the alarm for 45 minutes and take a nap every day. One of my meds is short-acting Ritalin so I take my second dose right before napping, before the medication has time to take effect.
I take medication for distance driving but still stop to nap if needed. I have a little blanket to half cover my face because I get embarrassed when my mouth drops open :) zzz... Before medication I stopped for naps but it took a very long time to reach my destination :). I NEVER drive when I'm tired.
I use a CPAP (Continuous Positive Airway Pressure) device at night for sleep apnea. You can have sleep apnea with or without narcolepsy. It has a soft mask that fits over my nose and it pushes filtered room air toward my nose to prevent episodes of halted breathing that interrupt sleep. Now I'm more alert during the day.
Survival ispressing through each day try to remind yourself on the bad days what you do on the good day.