Which Doses Will Work This Time? My Narcolepsy Story

by Shanna
(Missouri)

I am a 39 year old woman, I was diagnosed with Narcolepsy in 1999.

My first memories of the symptoms of narcolepsy are from High School, my Jr year, 1988-89. I went from being an A-B student to failing 4 classes that year (it's hard to pass a class when one is fighting to stay awake all hour). I vividly remember goofing around with friends between classes and my knees giving out from under me. I'm sure I went home and told my parents but they probably thought I was just being a silly teenager. I managed to graduate but just barely.

In my early 20's I visited a few doctors; complaining of falling asleep all the time and that my knees would buckle when I would laugh. They all ran the same tests...glucose tolerance and check to make sure that my thyroid was working properly. Of course, all of the results would come back just fine. When I would press them about the knee buckling when I laughed, they would just tell me that they had never heard of such a thing. Every doctor who I saw for the sleepyness came back with the same answer. They all told me that I was just a naturally sleep person.

By 1999 I had 2 little people calling me mom. I was working at a desk job 40 hours a week, driving in rush hour traffic for about an hour each way. Some mornings it was hard to keep my eyes open on the highway. Every evening was a nightmare. I would wake up in parking lots, on the shoulder of the road, in strangers' driveways, and have no idea how I got there. I was constantly late picking my kids up from the sitter and there were several evenings I would get us to our driveway but have no idea how it happened. Lucky for me my job was not too demanding and I had a lot of free time on my hands. One day I decided that I had had enough of the sleeping and driving and did a little search on the internet. The first paragraph I read about narcolepsy just about knocked me out of my chair...excessive daytime sleepyness and knees buckling when one laughs...that was it, what I had been dealing with for over 10 years.

I spoke to my primary care doctor about what I had read and she set me up for my first sleep study. I stayed all night and most of the next day. The MSLT was like a day at the spa for me. Someone coming into my room every few hours asking me to close my eyes and try to go to sleep. I believe my average fall asleep time was 3.5 minutes, entering REM in 4 of the 5 naps. The results of that sleep study got me referred to my first sleep specialist. It was quite clear that I suffered from all 4 symptoms of narcolepsy. This first sleep specialist was so excited to see me for the first time...I was his first patient who had all 4 symptoms. He put me on Provigil ASAP and an average dose of some anti-depressant. I took them both for about a month...still fell asleep all the time. Being the natural sleepy person that I was, I had a funny feeling that it was the anti-depressent that was counter acting the Provigil. Since my cataplexy didn't seem too severe, my doctor agreed to take me off of it. I still fell asleep all the time. The doctor increased my dose of Provigil. I still fell asleep every time I turned around. I began to question that doctor's knowledge of narcolepsy.

I found a new sleep specialist. He doubled my dose of Provigil...it was crazy...like 200mg twice a day. At that point I was bouncing off the walls and falling to the ground every time I laughed or got very mad. My sleep was horrible. The dreams....and being trapped in them...I got to where I hated to close my eyes at night. Once again, I took matters into my own hands. I did a little research and discovered that the sleep specialists I had been seeing were both pulmonary specialists. When I asked why a lung/breathing doctor would treat someone with Narcolepsy, a neurological disorder, I was told that the most common sleep disorder was sleep apnea...a breathing issue...and that all sleep disorders were sort of bundled together...and since the pulmonary specialist saw so many patients with sleep apnea they were qualified to see any one with a sleep disorder. I really didn't like that answer so the search was on for a new doctor, one who knew a little more just about narcolepsy.

I found an awesome neurologist. We finally found the right dose of the right stimulants and a very small does of an anit-depressent to control the cataplexy. Life was good...for a while. When I became pregnant with my third child, I was taken off all my meds. I had to take sick leave from my job on an automobile production line due to the fact that I couldn't stay awake. After my son was born I went back on the same doses of the same meds but this time they didn't work as well. The cataplexy had gotten worse and we just couldn't seem to get the combination right again. I ended up losing my job. I filed for disability but was told that I would be quite capable of working a desk job 40 hours a week. That was hilarious to me. Put me behind a desk and watch me fall asleep in a matter of minutes. Sitting still and not doing much was the worst situation for me to be in. I went off all of my meds and just dealt with the symptoms. I stayed at home with my kids and slept when I needed and tried to land softly when I fell.

Now to the title of my story...About 8 months ago I had to return to work. For the first 4 months it wasn't too bad...I was always on the go and would sneak a nap here and there. For the past 4 months I have been at a desk...asleep half the time. I finally made an appointment with that awesome neurologist. We are trying to find the magical combination for me again. He started me on Adderall ER 20mg first thing in the morning. Three weeks in and my dose has been doubled. He is suggesting Xyrem at night but I am scared to death to try it. Something is going to happen soon though because my sleep is a total nightmare again. I'm almost 40 years old and I just don't know that I can go down this road again.