A Return From the Dreamland of Narcolepsy: Treatment Plan Works for One Mom

My symptoms for Narcolepsy started when I was a child. I had terrible nightmares, I slept walked and carried on conversations while completely asleep, and I had insomnia.

I was diagnosed at age 23, around 17-18 years after first showing symptoms. Around 21, my symptoms became much worse. I am married and at that time my daughter was around 2-years-old. I could barely work due to the sheer exhaustion I was dealing with every day. I would sleep up to 16 hours a day and still be so depleted that I could barely get up. I saw doctors regularly, blood work and thyroid checks, neurologists, ect. I was finally put on a medication called Phentermine, which basically works like speed, to combat the 30 pounds I had put on that year (weight gain is very problematic for most people with Narcolepsy). That medication saved me.

I was able to get up, I was able to run, play, everything! The difference was so drastic that I did my own research. I believed I had Narcolepsy and took my findings to my doctor. Two sleep studies later and I was diagnosed without hesitation. It’s been less than a year since I’ve had my official diagnosis. My disease is managed by medication most days. I hold down a full time job and my life is back on track. There are things that my family and I’ve had to get used to. I do have to take naps most days, I can’t drive for long distances or at night, and I have to watch when and what I eat. There is no cure for Narcolepsy, but there are great doctors and treatment plans to make it manageable. I encourage anyone who has been struggling to ask their doctor about a sleep study. This is a lifelong disease and will be with you everyday. I believe accepting your limitations and finding a plan that works for you is the best thing you can do for yourself. Narcolepsy will be with you, but your path is your own and I wish you the best of life.