The Onset

My intention in creating this blog was so that persons who have acquired the disease can find some guidance and maybe even some comfort in the knowledge that, as difficult as it may seem, it is possible to have reasonably full life notwithstanding the undoubted handicap that they will suffer. Another primary reason is to provide narcoleptics with facts from which they may arrive at an independent judgment as to whether the drug enforcement agencies, particularly those in the United States are serving them as well as they could.

I am a citizen of and live in Jamaica, a small island in the Caribbean and at the commencement of this intended Blog I was three weeks short of my 74th birthday. I am now 74. Over the last nine years I have been suffering from increasingly severe rheumatoid arthritis and apparently mild prostate cancer, the effect of which has so far only served to deprive me of sexual pleasures. I have been suffering from Narcolepsy from my 15th year, and I mean the Whole Works - EDS, full blown cataplexy, hypnagogic hallucinations with all the terror that goes with it, and sleep paralysis etc.

I remember the first day Narcolepsy struck. The first symptom I became aware of was the cataplexy. I was at home in my garden with my older brother and some friends and I nearly fell on my face a few times as my knees went limp whenever I was amused. Alarmed, I ran to report my experience to my mother. I was in High School at the time and expected to sit for Senior Cambridge exams in my 16th year as I was considered to be bright. Not after I began to experience EDS in school, however, as I was kept down when I could not keep up with the class anymore due to what was regarded as my indolence. In fact there was an element of indolence in my approach to school, but up till then I had always managed to be in the first 4 or 5 in my class. Still it hurt to be so regarded by teachers whom I respected. All I had to do was to open a book to fall asleep before completing the first paragraph; and, of course I could not keep my eyes open for five minutes during classes.

This was in about 1951 to 1952 and my parents took me to doctor after doctor, most of who suggested that I was just a terribly spoilt child. After about a year we had some luck. The Neurology Department of the University Hospital was being established by an English professor named Cruikshank and my parents succeeded in getting an appointment for him to see me. It took the professor little time in diagnosing my condition as Narcolepsy. (Interestingly, he also told my mother and I that Winston Churchill also suffered from Narcolepsy. I don’t vouch for the truth of this but this is what I was told). Professor Cruikshank also pointed out that I might have to live with Narcolepsy for the rest of my life but that its effect could be modified by drugs and he prescribed 6 - 8 x 5mg tablets of Dextroamphetamine (Dexedrine) daily. I can’t recall all the specific details of the prescription but I know that I always started out the day with two x 5 mg tablets. The administering of the medication would be done by my family physician, who knew nothing about Narcolepsy and I doubt that I saw Professor Cruikshank more than once or twice after that.

I do not quote the professor in using the word “modified”, but only state the effect of what he said. The reality was in fact a moderation of his instructions. One would have to be very familiar with my condition over the year before I started the medication to appreciate its effect on me. None of the symptoms described earlier were eliminated, though their onset must have been reduced somewhat, for as a result of the faithful intake of the medication I was able, with herculean effort, to obtain Credits and Passes in the Cambridge Overseas Exam, the next year and then two years later, to sit for and “scrape through” the Higher Schools’ Certificate. Every narcoleptic who reads this will understand what I mean when I say “herculean effort” - the effort to focus on a word, a sentence, as you go off for a millisecond and have retrace your reading two, three, four times to make any sense of what you are reading - all this and more continued to be present despite the medication I was taking, but I was somehow able to concentrate for longer periods of time. Almost as important, I suppose, is that I was able to give some legitimacy to the condition I had although I am sure that there remained a great deal of skepticism about its existence among my teachers. Whatever they may have thought, however, there was no longer any indolence in my attitude as it took everything I had just to keep up. One of the immediate effects which the onset of Narcolepsy had on me was in altering my personality. Whereas I had been aggressive, unselfconscious and daring, I became introspective, shy and indecisive thereafter.

The limited effect that Dexedrine had on my EDS did not mean the I no longer fell asleep while walking, or riding my bicycle or while talking, in the middle of a sentence. These remained as commonplace events, and will probably remain a mystery to anyone but a narcoleptic how I could ride a bicycle to school every day and not fall off or run into someone or something. However, it never happened. It seems to me, in recollection, though this is very largely guesswork, that the medication I was taking then, had a greater effect on my EDS than on my cataplexy, or my hypnagogic hallucinations or the other symptoms which I had. Cataplectic attacks in particular have been the bane of my existence and are often combined with the hypnagogic hallucinations. So far as I knew back in the fifties, Dexedrine was the “only game in town”.