Living with Narcolepsy
I read about cataplexy in a Reader’s Digest magazine, and suddenly realized that something that I thought was normal, as I grew up with it, was not normal at all! My curiosity stimulated, I looked up the term “cataplexy” in my psychiatric handbook.
Surprisingly, it was listed under narcolepsy, and now being even more curious, I read about narcolepsy. Needless to say, I identified myself in all the other symptoms, even the ones described as being rare! Being a student-nurse at the time, I knew that it was easy to go overboard with some of these things, and took no note off it, as I was not too affected by the disorder at the time.
Stress Worsens Symptoms
Now a registered nurse, I decided to work in an acute psychiatric ward. That was a BIG mistake. I encountered my first major stressor in life, and narcolepsy symptoms started developing. I had constant migraine headaches, and eventually decided to see a neurologist. The EEG was normal, but the doctor prescribed Inderal, a drug known to reduce migraine attacks. A known side effect of Inderal is nightmares. My infrequent nightmares became frequent, to such an extent that I was afraid to fall asleep. Unfortunately I had to sleep, and stress made things even worse than it was already.
My neurologist sent me for a polysomnogram. I was admitted to a 4-bed neurology ward with three elderly ladies as roommates. I had a very bad night, little sleep, and got VERY agitated. The diagnosis was sleep epilepsy. I voiced my dismay to the Neurologist, and told him that I was sure that this diagnosis was incorrect. I was sure I had narcolepsy. He chose not to listen to me; he prescribed Tegretol. This medication made me a walking zombie. He then prescribed Rivotril, known to cause excessive sleepiness. Unable to stay awake at work, I was forced to spend the next two weeks at home sleeping most of the time.
I became suicidal. I did not share this with anyone, because I knew that I would be locked up for sure. I had a testament drawn up, paid all my outstanding accounts, and was ready to end this madness once and forever if no one could help me.
Once the nightmares started, they never stopped. Then came the sleep hallucinations and sleep paralysis. I would ‘wake up’ three to four times a night. In my nightmares and hallucinations, someone would enter my room and harass me. I was unable to move.
When I eventually managed to wake up, I realized that it was only hallucinations, but this did not make the experience any less frightening or distressing.
My survival instinct kicked in. I stopped all medication, ask to be moved into a less stressful work environment and decided to find a doctor that would listen to me. At my workplace, we had a Neurology outpatient clinic. Without an appointment, I took my chance and slipped into one of the neurologist’s offices. I asked him if he could spare me a few minutes to listen to my problem.
This time I went about it in a different way. I described my symptoms to him, not telling him that I knew what it was. He looked at me for a while and asked me if I had ever heard of narcolepsy. Of course I did, but that was not what I told him. He made a phone call, and after some time asked me if he could refer me to someone that specialized in sleep disorders. Finally!
I saw the Sleep Specialist a week later. He did a thorough neural evaluation, asked a whole lot of questions, and told me that he was almost sure that I had narcolepsy, but could do a blood test to confirm this (I did not know that such a test could be done). He also wanted me to see a psychiatrist, to exclude any other pathology.
The Diagnosis at Last
My nerves were killing me, waiting to hear the results. The neurologist and sleep specialist called me in to their office. I was assured psychiatric evaluation was normal. However, the blood tests came back positive for the narcolepsy gene! Finally, after years of struggling, I had my official answer, one I suspected for so long!
Getting on with Life and Living with Narcolepsy
Now the challenge to try to get this under control. I have been through it all! I cannot even remember all the names of the medications I have tried over a period of about three years! Finally, Prozac with Ritalin as a stimulant seemed to work the best. I had to learn to change my lifestyle, take afternoon naps, and also had to come to terms with living with narcolepsy.
I am working full time, and have mastered the art of falling asleep at meetings without being noticed – well most of the time! I have a cat that sleeps with me on my bed. She is my best friend, tolerates the endless conversations during my sleep, and doesn’t tell anyone if I had a nightmare.
What she does best is helping me distinguish if my sleep hallucinations are real or not! Somehow I can monitor her reaction during one of my dreaded sleep hallucinations so that when I think I have a stranger in my room and she is not reacting, he’s not there!
Telephone calls can be confusing, as it is hard to decide which ones are real and which ones were dreams or hallucinations. I control my cataplexy by monitoring the amount of Prozac I take. It’s amazing that I’ve not broken my neck through a spell of uncontrolled cataplexy. God is definitely looking out for me, a challenge to say the least!
Over the past 12 years since my diagnosis of Narcolepsy, I have had to learn to live with myself, accept that there are things I cannot do. I do not go out in the evening during the week. or I risk the danger of falling asleep at work the next day. I HAVE to take a two-hour nap in the afternoon otherwise I will be wide-awake at two in the morning. I wake up every two hours during the night, but try not to worry about it. The more I worry the less I sleep!
I practice self-hypnosis to help me fall asleep. Hypnosis, done by a professional, helped me get rid of some of my recurrent nightmares and gave me the skill of self -control, especially of my emotions, because it can get a bit out of hand when I get over tired. The hypnotherapist understands my need to be in control, and has taught me a life long skill to alter my subconscious mind. I am OK!
Miranda is from South Africa.
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