From Fatigue to Cataplexy: Dealing With My Narcolepsy
Looking back at my childhood, I can honestly say that I do not recall any Narcoleptic symptoms. I was in my late twenties when symptoms first developed. I found myself falling asleep at work while doing the nightly paperwork, when I was sitting for extended periods of time, and while driving long distances.
I didn’t think anything of my sleepiness; working 60+ hours a week, it made perfectly good sense to be so tired. As the year went on, my “falling asleep” episodes continued to increase, and I began to also have Hypnagogic Hallucinations, Micro Sleep, and Automatic Behavior. I felt as though I had lost control of my life.
Hallucinations happen as you are falling asleep; they tend to be very scary for most. What is so outstanding about them is that they involve our senses, typically the senses of smell, hearing, feeling and even seeing. It has taken me many years to come to grips with these hallucinations. I’ve suffered countless nights of waking terrified, convinced that there was someone in my home who was going to hurt my children or me.
Not all hallucinations are of a scary nature though. There was about a six-month stretch where I actually could not distinguish between this dream state and reality; they crossed over. For example, while napping, the answering machine would answer a phone call and I would hear the message. I would actually hold a conversation with the caller in these dreams. You can imagine the confusion running through their mind and mine when the caller finally got hold of me and asked why I did not return their call, and I would say that we just spoke the other day or that I had paid that yesterday using my credit card.
This even went as far as conversations with my family members. I knew darn well that I had that conversation with them …only to be in trouble for not telling them that they were to call someone back or to be at a job at a certain time.
The best way that I can explain automatic behavior is to give an example of my own experience with this. At that time my job was as an auditor; we wore computers on our hips and would inventory stores. Basically we stood in front of an aisle and actually counted each and every thing that you see there.
Countless times I would be walking along down the aisle counting and then someone would call my name or I would bump into something. I would jump out of my skin, and then, and only then, would I realize that I had been asleep! I had just counted thousand of dollars worth of products and did not realize it nor could I recall counting it. The real clincher is, the count was wrong and needed to be recounted the majority of the time. You can guess where this got me in my job!
Testing, Testing, Testing
My doctor by this time had run me through the majority of typical tests for fatigue. She found nothing other then possible depression to be the factor causing my fatigue and other symptoms, and prescribed an antidepressant for me. After all, why else do people feel the way that I did?
One desperate night, after concluding that I had lost total control of my life and was now bordering on the edge of insanity, I called my doctor informing her that she had two choices, either figure out what was going on with me or simply lock me up. I was dead serious.
The following morning I received a phone call from her. She explained that she had been up all night talking to colleagues about my situation and had come to the conclusion that I should undergo a sleep study. One week later I underwent a Polysomnography and a Multiple Sleep Latency Test.
Several weeks later, sitting in the neurologist’s office I was informed that I passed the sleep study with flying colors! Not only did I have the REM onset to classify me as a “textbook narcoleptic”, I also had several apneas throughout the night. I will never forget the look on my doctor’s face; he was actually thrilled to have someone like myself sitting in his office! I will not go into great detail about my ongoing search for a doctor in my area that truly understands narcolepsy, other than to say that I am on my fifth doctor and still searching.
At first I was very relieved to learn what was going on in my life, to understand that I was not losing my mind, and indeed did have an identifiable disorder. I recall walking out of the doctor’s office crying. My doctor had prescribed Cylert for my Narcolepsy and Prozac for my Cataplexy. At that time I showed NO signs of any cataplexy, but he insisted that I had it. He saw no reason to treat my Apnea, and being so new to the world of sleep disorders I thought nothing of it. It was many years after my initial diagnosis until I finally received my CPAP.
When my symptoms first appeared, they were very mild (though frustrating) and fairly manageable with the use of medications. I was still working full time and had started a full time course at our local Community college. By the third year after my diagnosis, not only had I lost my job, I was failing college and was on the verge of losing my family.
I soon found myself frustrated and angry again, as my narcolepsy began to increase dramatically and it seemed no matter which medication or combination of medications I took, I found no relief. I would dare say that my narcolepsy symptoms tripled in the first 3 years, and then came the cataplexy.
Cataplexy is defined as the loss of muscle control triggered by a strong emotion. That definition, on its own, is rather confusing. My first cataplexy attack was a “classic” example of this definition. I found my cat on the table licking the butter and went to swat her down. She ran and I ran after her. The next thing I knew, I was face down on the floor; I had indeed lost ALL muscle control in my body due to anger. It was almost a year after that experience before I actually fell to the floor again.
My cataplexy started much like my narcolepsy symptoms had (aside for the first full body collapse), very mild. My knees buckling, eyes rolling back, jaw sagging, slurred speech, my arm would droop or my neck muscles would give out, letting my head sag to the side or forwards. All very subtle, but noticeable. At that time my emotional triggers seemed to be mostly humor of all things! To think that I live in a house of comics!
My attacks soon grew along with my triggers. It is very difficult to say exactly which emotions do set me off; there are many of them. Flashing lights or certain lighting are triggers, along with fatigue, stress and some foods. My cataplexy is triggered not only by humor, but excitement from seeing a friend that I hadn’t seen in some time, greeting cards (both humorous and sentimental), the cat doing a silly flip while chasing a fly, my children receiving an smiley face on their school paper, you get the idea. Some bugs set me off too (this one amuses me so much that I often have continuous attacks).
On rare occasions, anger will set me off also. Something rather comforting though, is when in the middle of a disaster; such as my child breaking his arm, I stand tall! Not once, when faced with one of these types of situations have I had to deal with my cataplexy, only afterwards I am so totally wiped out that I will sleep for hours.
My cataplexy today is often frustrating and I often have continuous attacks. I call them my drunken stupor for that is the only way that I can explain them — I actually appear to be drunk. These attacks will last up to 10 minutes at a time and it takes great concentration to snap back to the real world. Depending on my fatigue level, I will continue to have these attacks with small breaks between them until I lay down and take a nap.
When I was first forced to be home by my disabilities, I found myself very angry at the whole world! I loved working and most of all, I loved going to college. It took another year from that point to accept where I was and why. In an odd way, you could say that narcolepsy gave my children their mother, for prior to that I was never home. When I was home, I was dead tired and typically miserable and crabby.
It has been six years now since I sat in that neurologist’s office. Today, I am at peace with my narcolepsy/cataplexy and sleep apnea (which is now being treated). That is not to say that I do not have days where I am totally frustrated and down right angry, simply that I am okay with the hand that I have been dealt. Most important though, is that my family is at peace again.
If I had to give any advice as to how to deal with narcolepsy/cataplexy and sleep apnea it would be this: Humor is my number one tool.
Understanding…read, read, and do more reading…ask questions…listen and learn. Support, after I got my computer and found an Narcolepsy support group and now Talk About Sleep, my ability to cope with all of this has become so much easier and a down right joy at times…I have made so many good friends. Finally, I would have to say Acceptance, finding the ability to accept your disorder, which for me was perhaps the hardest.
I have so much more to share; stories about my family (husband and 3 sons) and their ability to deal with my narcolepsy and their ability to deal with me. There are funny stories and sad stories, but I am sure that your eyes are getting tired and that you are beginning to fidget. I will leave my mailbox open though…you are more then welcome to drop me a note, question, or just a simple hello.
If you would like to share your unique sleep story, please contact us at: PatientStories@talkaboutsleep.com
Or submit your story in a Microsoft Word or Text format to: PatientStories@talkaboutsleep.com