The National Institutes of Neurological Disorders and Stroke defines Narcolepsy as: “a chronic disorder of the central nervous system characterized by the brain’s inability to control sleep-wake cycles”. On average it takes 10 years for a person to be diagnosed after the onset of symptoms. Sleep medicine is still a relatively new field. About one in 3000 Americans suffer from Narcolepsy. About 70% of those who have narcolepsy, also suffer from a condition called cataplexy, which is a sudden and transient loss of muscle tone which causes a feeling of weakness, and loss of voluntary muscle control. Cataplexy is relatively rare, occurring in fewer than 5 out of every 10,000 people. It occurs only in narcolepsy (except for a temporary ” mimicking version” which can occur in sudden withdrawal of Serum Serotonin Reuptake Inhibitors). Narcolepsy with Cataplexy is almost always due to lack of a substance called hypocretin in the brains of those effected. No hypocretin = no sleep-regulation ability, therefore there is essentially no clear boundary between the sleep and wake states. Narcoleptics often enter partial wake states when they are sleeping, and enter partial or full (intrusive) sleep states when they are awake. Intrusive sleep attacks can be as brief as a few seconds to a full-out unwelcome and unplanned “nap” My initial “micro-sleeps” really freaked me out because I was aware of “gaps” in a conversation or visually in something I was looking at.
As a nurse, my various diagnoses did not satisfactorily explain all of my symptoms. Chronic fatigue syndrome is real, but for me, the label was not enough. I needed to know why I was tired all the time. Sleep apnea was diagnosed, and treated, but the fatigue was still there. I was diagnosed with Fibromyalgia, due to all the trigger points and pain, but I still believed there was more to the puzzle. Then the episodes of sudden weakness began. I was disabled from Nursing in 2000 but continued to attempt to work anytime I was able. In 05 I was working as a school nurse, and the Inclusion (special ed) teacher was always picking my brain about things going on with her kids. One day she described how one student seemed to fall asleep “at the drop of a hat” and asked me if I thought he might have narcolepsy. As a nurse, I thought I had a pretty good idea of what Narcolepsy was, everyone thinks of it as “that sleeping disorder”. But I told her I would do a little research and get back to her. It was then that I learned about Cataplexy which described precisely the unexplained “spells” I had been having. Doctors could not seem to get it through their heads that I did not lose consciousness during these episodes, and since EEGs had been normal, and the neurologist felt that what I was describing did not fit with seizure disorder either. When I was convinced that what I was dealing with was Narcolepsy with Cataplexy, I went to a neurologist with my concerns and her exact response was laughter, followed by “you don’t get to come in here and tell me what you think you have. I am the doctor, I will determine that”. The trauma of the unexplained and alarming symptoms paled in comparison to the trauma of the fight involved in getting diagnosed. I have notes from ER visits where I have circled things the doctors wrote, which I did not say, because their “field of vision” was so narrowed by their specialty, that they did not even hear what I actually said. Unbelievable! Had I not been a nurse, I dare say I still would not have been properly and officially diagnosed, and would still be untreated.
After extensive (and I could have told them-unnecessary) cardiac workup, and neuro workup, one neurologist eventually suggested that I see a shrink. By this time I was so severely sleep-deprived that I was indeed having severe and rapidly changing mood swings and bizarre and unexplained sensory experiences, including a couple of auditory hallucinations, and was diagnosed Bipolar I. People in my life who know what I went through, say it is amazing that I was able to keep the presence of mind to keep advocating for myself until I found a doctor who would listen. There were huge chunks of my kids babyhood and toddlerhood that I could not even recall, until after I started getting better. I found the memories had been made, but my mind so dis-ordered at the time, that it took watching the baby videos and reading their baby journals (good thing I’m a writer) to begin to retrieve the memories of those fog-filled years. By the time I was diagnosed, I had been sick for 12 years. It took 5 years from the time I had figured out that I had narcolepsy with cataplexy, to find a physician capable of and willing to evaluate me for it. By then I had a stack of records 3 inches thick, including many pages of journal notes in which I had documented my symptoms and experiences and was frankly getting very near the end of my rope. When this doctor got around to the part of his assessment having to do with my psychological state, I became silent and he looked up. My husband was with me. The doctor asked me if I had thoughts of harming myself. When I finally spoke, I told him that it was not that I did not want to live, but that I had lost all hope of ever having any quality of life again because none of the many doctors I had been to was listening. I told him about my stack of notes. I told him that I was a nurse and I had documented everything but no one was really looking at it. And do you know that doctor said “bring it to me, I will look at it”. And he did. He also hugged me and said “we are going to help you”.
He did yet another sleep study, my 5th, followed by the MSLT test immediately on the next day after the overnight study, and then I didn’t hear from him for several days. When he finally called me, he said “your brain waves are extremely chaotic and very difficult to read”. I said “try living with them” He laughed and told me that he had indeed established the diagnosis of narcolepsy with cataplexy. He applauded my determination and implemented treatment which literally saved my life. I am very certain that I would have probably gone on to have a heart attack or stroke, or a complete psychotic break, had help not arrive when it did. And curiously enough, my fibromyalgia pain nearly disappeared completely, my weight began to gradually decrease, and my moods leveled to such a degree that I have not required bipolar meds any more since the diagnosis in late 2007. Don’t get me wrong. I still live with these conditions. As I age, the fibro symptoms have returned, weight is always a battle, and fatigue and sleepiness are ongoing. And when circumstances are stressful, or I’ve had a long run of being sick or not sleeping well, mood issues will crop back up. But when the issues are addressed, and/or some tweaking is done to my medication, as long as I am vigilant, we can generally get me back on an even keel. Still my life is an ongoing rollercoaster of improvements and exacerbations that require constant effort to manage. Now I have also developed some neuropathy and there has been a change in the quality of the episodic weakness that concerned my sleep doc enough to send me back to the neuro specialist. Like any condition, I am sure there are plenty of things about narcolepsy which science and medicine have yet to discover. With all that my body has been through, I am not very surprised at any of the odd and unexplained things that happen. I have learned to trust my own intuition even when the doctors are alarmed about something because when your entire sleep apparatus is out of wack, all your other systems are bound to suffer.
I have had to really learn how to say no, and get over worrying about what people think of me when I do, or what they think of me when I do say yes, and then have to reneg. After a while, you just get tired of apologizing. I do the best I can and let the rest go.
For anyone interested in learning more, I encourage you to do a google search and read up on narcolepsy and cataplexy because I believe it is much more common than the official numbers show. And I believe that sleep disorders underlie many medical conditions, completely ignored and undetected in some people for their entire lifetime. Insurance companies would do well to require everyone to have a sleep study at some point. I think it would save them money in the long run. But that’s just the opinion of a nurse who has narcolepsy. No credentials there. (Ha!)
I had a hard time even finding a book on the subject of Narcolepsy, but the best one I did find was “Narcalepsy A Funny Disorder That’s No Laughing Matter” by Marguerite Jones Utley (1995). I was able to e-mail her and order the book. We exchanged e-mails a couple of times, and then I lost touch but I will ever be grateful to her for writing that little book. I recommend it to anyone who has Narcolepsy, thinks they have Narcolepsy, has a loved one with Narcolepsy and every doctor and nurse should read it. It is available to order from M. J. Utley, P.O. Box 1923, DeSoto, TX, 75123-1923
If you read my previous post entitled “Positivity” this post gives you some of the missing background which explains where I was coming from when I wrote it. I do not intend to use this blog as a place to rant, but there are some things that just need to be said sometimes.