Long Road

I was first diagnosed with idiopathic hypersomnia in 2013. In 2014, after an exhausting year on Provigil with no help, more sleep studies were done.

Getting a narcolepsy type 1 diagnosis with cataplexy

The studies showed that not only did I have narcolepsy type 1, but I had cataplexy with it. I could fall asleep in under half a second. I do not enter stage 4 sleep. I just stay in REM sleep for 4 to 6 hours at night, and during all the sleep episodes I have during the day.

When narcolepsy medication only works part of the time

I have been on Nuvigil and Ritalin for almost 4 years now. I've tried every other medication on the market, and none were enough to keep me awake. As it is, the medication regimen I have works about 30% of the time.

Narcolepsy at work and in public: when episodes are misunderstood

It is exhausting getting fired from jobs because I have narcoleptic episodes. About 5 years ago, I was in Walmart and had an episode, and they called an ambulance on me. I woke up to a dose of Narcan up my nose. When I showed the EMS my medical bracelet, which they had overlooked, they profusely apologized. The Walmart manager felt so bad he gave me a $1,000 gift card. It got me all kinds of much-needed things, even though I was thoroughly embarrassed.

Most people have no clue how hard it is to stay awake and work a regular job. It is hard.

What it takes to wake up after a narcolepsy episode

When I fall asleep, there is no waking me like a normal person. It takes loud noises to arouse me. I have my speaker set to max, and even then it takes a few minutes of me lying there before I can reach over and take my medication, and then I have to wait at least 45 minutes for it to work. I have fallen down flights of stairs before from not being fully awake.

Narcolepsy attacks in unexpected places

I've had narcoleptic attacks in the oddest of places. I had one walking into my friend's apartment complex, and I fell on top of a speed bump. I was thought, again, to be drug overdosed and was given Narcan. That is some nasty stuff. I can see that people with narcolepsy would have lower drug addiction rates. We don't like to be asleep any more than we have to.

Explaining narcolepsy and cataplexy to the people around me

I struggle enough with educating those around me about my disorder. Unfortunately, cataplexy is hard to explain, and I'm told it is very scary to watch.

Hoping for better narcolepsy research and treatment

I'm hoping the upcoming years will bring greater research and better, safer medications for those of us who suffer with narcolepsy.