|Member Since||07/23/2011 01:50 PM|
|Last Online||10/30/2011 07:52 AM|
|A little about me:||I was formally diagnosed with narcolepsy and cataplexy the summer of 2005. I had struggled with staying awake in class all through high school. My parents just figured my body needed the sleep because I was growing so fast. I had allergies to dust and pollen so the doctor told me I wasn't sleeping well at night because I had so much nasal congestion. I took allergy meds and still fell asleep in at least 2 or 3 classes a day. After high school I struggled to stay awake in community college. That is about the same time that the cataplexy started manifesting itself. I would feel my legs get weak when I found something to be really funny. As it got worse, my neck would go limp and my head would hang while I was laughing. Though nobody could hear me laughing because those muscles had gone limp also. Not such a good thing for the social scene.
My narcolepsy started getting worse too. As I entered my early twenties, I was finding it nearly impossible to stay awake during movies and sometimes I would drive to college and not remember parts of the drive! Pretty scary! This is about the same time I met my wife. We were just friends at the time and I needed her to tudor me for my math class. Since I couldn't stay awake in the class I needed someone to teach it over again. She had just graduated from a university and had her bachelors in nursing. Thank God for her. She called it from the first time she saw me have a cataplexy attack. She already knew I could fall asleep anywhere. Her medical training probably helped her figure it out.
We started dating in fall of 2004. Engaged in May of 2005. The engagement was just a formality as we had already been talking about getting married way before. She convinced me to have a sleep study that summer. They ruled out sleep apnea. Then during the four naps, I would fall asleep within 60 to 90 seconds after lights out and go into REM a short while later. It was so long ago so I dont remember the exact times. I just know that it was only a couple minutes. The doctor said it was severe narcolepsy with mild cataplexy.
Now I am medicated with nuvigal during the day and xyrem at night. I can do a lot more than I used to without falling asleep. The cataplexy is nearly gone! But if I get working to hard or don't allow myself enough sleep I find it really hard to stay awake sometimes. I work outdoors with my hands because being physically active helps with staying awake. Unfortunately the physical labor part also causes a lot of fatigue which in turn causes me to feel so sleepy. It is a hard dilemma to deal with. A desk job that won't take all my physical strength but I will fall asleep at work, or a hands on labor kind of job that helps me stay awake but leaves me exhausted and sleepy the rest of the day.
I joined this group in hopes of gaining insight into what others who have the same challenges, do to succeed in life. I am currently considering quitting my job so I don't have to commute any more. I recently was in an traffic accident and am fed up with my struggle to get to and from work safely. It is only 14 miles but traffic is ridiculous and can take 45 minutes to get home! Any employment ideas and suggestions are welcome.
No photos added