Monday, July 18, 2011

To tell or not to tell...

Since my diagnosis with narcolepsy, I have struggled with who to tell and who not to tell. I haven't even told everyone in my family that I have narcolepsy. Clarification: I have told everyone in my family, not everyone in my husband's family. I never even told my mother-in-law. My husband thinks he may have told her somewhere along the road, but she never asks me any questions. She would be the type to think that I just nod off and you can give me a shake, and Voila! I am awake! If only it were that easy...

At work, I had a few close friends that I told, one of which had been with me more than once when an episode hit prior to me being diagnosed. But what would happen if they weren't around or I couldn't reach them before I went out? I was torn. It isn't anyone's business, my medical history. And how would they take it? Would they realize how serious it was? How it affects each and every moment of every day of my life? Truth is, some will, some won't. I learned the hard way, but that is a post for another day!

After having several serious episodes in a row, I finally got a medical bracelet. You see, when I fall asleep, you would think I was completely unconscious. At first, I can hear what is going on around me but can't move. At all. Not even lift a finger. I have cataplexy, which is also called 'sleep paralysis'. I lose all of my muscle tone. Pick up my arm, it'll flop right back down. I drool. A lot. Good luck finding my blood pressure or pulse; they drop so low that sometimes they are unable to be detected. Think of how you are in deep sleep in the middle of the night. Your blood pressure and pulse slow, your respirations slow...same thing for me during an episode. Coming out of an episode, same deal. I can hear what is going on around me but can't move yet. When I am finally able to move, I need assistance. My speech is slurred, my gait unsteady. All of these symptoms can be mistaken for something else, hence the medical bracelet. I don't need it to save my life, just to save an unnecessary trip to the ER if someone were to find me fast asleep...

Sunday, July 10, 2011

"Hi, I'm (insert name here), and I'm a Narcoleptic"

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?