In his own words: living with narcolepsy
John, 50, learned he had narcolepsy 18 years ago. The North Carolina nurse's symptoms include cataplexy (a sudden loss of muscle tone), excessive daytime sleepiness, and microsleeps (short episodes of sleep during the day). The condition ended his military career and forced changes in many aspects of his life.
What was your first sign that something was wrong? What symptoms did you experience?
The first time, the dogs were jumping up on the screen door. I rushed to open the door, so they wouldn't damage the screen and found myself on the ground. I couldn't get up but was aware of the dogs licking my face. It didn't last but 30 seconds, but it was pretty scary. It didn't happen again for two months. That time, I was putting insulation in the attic, and it started to rain. I ran to move the insulation under cover and again, found myself on the ground. I was embarrassed but unhurt. I thought I was having seizures or maybe even had a brain tumor. Working nights, I felt tired, but everyone did.
What was the diagnosis experience like?
The first test the doctor ordered, an EEG, showed slowing in the temporal lobe. The doctor treated it like epilepsy. We tried three different drugs without success. I asked to be sent to a major medical center for a complete evaluation. The psychiatrist at the medical center sent me to a sleep center. I thought it was ludicrous. But the sleep latency test found early rapid eye movements, five times out of five. Three out of five makes the diagnosis of narcolepsy. They kept me for additional studies. The doctor told me the problem was solved. He said it was an unusual disorder, and as a nurse, I'd be able to help educate people about it. I was started on a stimulant, but within a month developed tolerance. And I was out of the Air Force. We moved to North Carolina to be near our parents.
What was your initial and then longer-term reaction to the diagnosis?
I was glad I knew what it was. I really thought I'd still be able to have a successful military career. But it didn't work out. I've been on unemployment three times. It's very demeaning and makes it hard to pay the mortgage. I am aware of my limitations and am able to work around them.
How is narcolepsy treated?
My neighbor saw a television program about an experimental treatment, and I traveled to Ohio to participate in the research. I now take Xyrem, an experimental drug containing gamma-hydroxybutyrate. It has controlled the cataplexy and allowed me to go back to work twice. This is a miracle drug. I also take Provigil (which promotes wakefulness), so I don't have to drink as much coffee.
In the past, I took stimulants, but they caused blood pressure and heart problems. I also was on an antidepressant for a while. It controlled the symptoms until my body developed tolerance. Then I had to take two to three week drug holidays and couldn't work. I'd have sleep paralysis and hallucinations and be on total disability. I also was on codeine for a period of time. The cataplexy was not as severe, and I could walk without falling.
Did you have to make any lifestyle or dietary changes in response to narcolepsy?
I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over.
Did you seek any type of emotional support?
As soon as I was diagnosed, I contacted a national organization that no longer exists about a support group. When I moved, I formed a local support group. I joined Narcolepsy Network when it started. I try to educate people about the disorder and the importance of early diagnosis and effective treatment. Also after losing a nursing job after nine years, I needed a year of counseling to help me get over it.
Does narcolepsy have any impact on your family?
My wife is supportive. Due to sleepiness, I have missed time with my daughter as she grows up. Before I began on Xyrem, my parents were afraid to call. They didn't know if I'd be napping or irritable. We lost a lot of quality time.
What advice would you give to anyone living with narcolepsy?
Keep the faith. There's more research under way.