Living with Narcolepsy

I am a senior in High School, I am 17 years old, and I have been living with narcolepsy for about 5 years now.

At first when I was about 9 or 10 I was diagnosed with diabetes, I was on a very strict diet and was still sleeping constantly! I couldn’t go out with friends because I could never stay awake, and wasn’t any fun. So I lived eating terrible food for a pre-teen to have to eat and was missing out on life because I was to busy sleeping. I was diagnosed with diabetes after, what seemed like one million different test, but only was about 20. I had the hypoglycemia test done about 6 different times, and couldn’t even stay awake through those. I had blood work done about 10 different times and many different protein analysis done. After all that extensive work was done, I was sleeping what seemed like more and more everyday so my mom got worried and was like we have to get this under control before she start driving!

So we went to another doctor to get a second opinion and she said lets do a sleep study. So my mother and I woke up at 3 in the morning to drive to Waco, Texas. And we did a day study where I was suppose to go to sleep every like 10 min. and she would see how long it took me to go to REM sleep which is the deepest sleep, the part where you dream, and I was in REM sleep in under a minute! Which is not normal, the normal rate when taking a nap during the day, if I can remember correctly is like 10 minutes or something of that range~ so the doctor was like alright lets not jump to conclusions and take a night study. THE WORST NIGHT EVER!

When we got there the guy explained what we were going to do and all, he said he had to attach these things to my head and I was going to sleep. I felt so claustrophobic. Anyways so I was getting to REM sleep Fast and my dreams were vivid and the little computer screen was going crazy~ so the doctor in the middle of the night came and got my mom because he was worried about my heart rate, and he explained what was going on and all, but like my dreams where so crazy that I was crying in my sleep, like ballin, and that he could tell when I would hallucinate and he said that this was the most he has seen in years! My doctor asked me about how many hours do I sleep during the day, and I told him “well I have about 5 minutes between my 50 minute classes and I sleep in everyone of my classes the whole period and then I get up and walk to the next class and fall back asleep, so you count, and when I come home I go strait to bed and have restless sleep the whole night and I have REALLY BAD dreams!”

My doctor says that I have a sever case and that I can never live on my own and drive late at night or early in the morning! So when we left the doctors office after he had confirmed that I had narcolepsy I cried and cried and cried! I had heard of people with narcolepsy and been terrified when I was little and now I live it everyday all day for the rest of my life! I take 2, 200mg of Provigil everyday and I also take Restoril and something else to help me sleep at night. So basically my body runs on meds. all day every day. I drive everyday to school and I work from 3 to 9 and don’t have a problem driving at all. I live my life and I don’t let this THING I have control me and my dreams and goals!

I think that the best advice to people with narcolepsy that I can give is just suck it up and move on, do what you gotta do to survive and don’t let it get in your way, I have had many people tell me that I am not going to be able to live on my own and do my own thing ever and it doesn’t stop me, but all at the same time you have to know your boundaries and your limits and don’t push them, If you feel tired driving stop and rest don’t hurt yourself or others!