Stigmatized. That is how I felt when I was first diagnosed with narcolepsy. All I could think of was Prince Valium from the movie "Spaceballs". Or the narcoleptic puppies on YouTube that everyone thinks are hysterical. Except this is not funny. This is my life, and I am slowly learning how to live it as a narcoleptic.
I know what narcolepsy is like for me. I don't know what it is like for others. But I need to. I don't know any other narcoleptics, but I feel the need to share my story, and that is why I created this blog.
It took almost 15 years for me to be properly diagnosed with narcolepsy. In my high school years, my doctor told me I needed to learn to deal with stress; he assumed I was having panic attacks. So why would this happen in the middle of summer while I was hanging out on the beach with my friends? With my twenties came a new doctor, and a new diagnosis. He was convinced I had a condition called vasovagal syncope. He treated me for this condition for a few years. But his treatment wasn't helping. Another round of EKGs, tilt table tests, EEGs, then finally I ended up at a neurologist's office. I told him my lengthy history. After listening to me for several minutes, he stated "You have narcolepsy". I laughed. Out loud. He sent me for a sleep study, overnight and MSLT. I was 'off the charts' a narcoleptic.
It didn't end there. After years of misdiagnosis, I was skeptical. Independently I saw four more doctors. I brought select parts of my medical records, and left out anything with the diagnosis of 'narcolepsy' in them. I had additional sleep studies. I was diagnosed with narcolepsy by each of those four doctors. My skepticism dissolved. I was 5 for 5. I chose to stay with a neurologist that is a leading expert in sleep disorders in the Northeast. He is experienced. I trust him. He is helping me, as I put it, "live better through chemistry". As narcoleptics, that is really our only choice, isn't it?