Member No.: 523
Joined: 29-August 11
Not many posts on this forum in some time, but reading through the intros has been very insightful, so thought I would contribute...
There is little question in my mind that I've been a narcoleptic since I was 10-12 yrs old. Since this time (Grade 5/6), I've always been known to fall asleep in class, in front of the TV, etc. Interestingly, though, its only when I'm was dormant that I feel drowsy; ive never had any uncontrollable bouts when active. I even earned the nickname "dimmer" for my ability to "dim out" during tape/film sessions throughout my university sports career (football/basketball).
The drowsiness symptoms have always been a major pain in the ass. They often pissed me off too, particularly when studying for uni/grad school exams, or pushing on major work deadlines. On a personal level, though, the worst has probably been the impact on my wife, who is ultra-supportive but has to deal with a dozing husband on the couch all the time in the evening....for some reason, this frustrates me the most...
My job doesnt help. I regularly push 60-70+ hour weeks working in the capital markets. Whenever I mentioned my symptoms to docs in the past, they always just told me to get more sleep. Thankfully, after the insistence of my wife, I finally went to a sleep clinic 4 yrs ago (I was 32 at the time). "Textbook narcolepsy" was the feedback after 20 minutes of sleep tests. One doctor did had the nerve to tell me that my career/workload was probably "incongruent" with my condition, but my reponse was flat out, "that's absurd". Sure, I have limitations/challenges, but so does everyone. My view has always been to accept the challenge, adapt to it, and battle through any challenges that arise, and my diagnosis wasnt going to change anything. Besides, I had done pretty well all my life without a diagnosis, so i figured treatment would only help me do better....and it has.
My only advice (for what it's worth) is to try and confront the problem head on. In many respects, I think my perception may be admittedly skewed vs. others as my symptoms sound far less severe than many described in these forums (no cataplexy, trouble sleeping, etc). Still, I've always taken the view that my diagnosis will NEVER hold me back, and its one that's helped me tremendously through life's ups and downs. Maybe its just me playing off my internally competitive nature?; maybe Im just profusely stubborn/ignorant?; either way, its an attitude that's helped. Whenever people joke about my habits on a personal level, I just laugh it off, use self-depreacating humour and change the subject. I don't want sympathy, and I'll never take it frankly.
From a career perspective, tolerance is clearly a challenge. I've always recognied this up front. As a result, Ive become ultra-attentive to my personal bio-rhythms, health, diet, anicallary planning and mitigating responses. For eample, whenever possible, I plan my day to compliment my most productive hours (6am - 1pm). My most difficult tiem of day 1-3pm, so I typically med up in anticipation (Dexedrine 10 mg). I schedule most of my conference/outgoing calls during this period as I find keeping my brain as active as possible very helpful. I stand during this period as much as possible, preferring to leave my chair in the corner. I eat light, SMALL portions. Big meals/lunhes are a killer, they induce drowsiness within the hour. When all else fails, I close my office door and knock off a 10-15 minute power nap. My experience in this arena is that >20 minute naps are bad news, they typically make me ultra-drowsy. Better to keep them brief. Becuse I can force myself to pass out within 1-2 minutes typically, I can be pretty precise about the timing (always set an alarm). The beauty of this approach is that I've never once had a complaint--15 minutes is less time than some people spend surfing the net/taking a crap. And it is highly effective--almost always eliminates the drowsiness. Another approach is to go work out duing this period. I love the gym, so I typically train hard for 45min to 1 hr, shower-up, then take an immediate power nap afterwards, (this combo is brilliant--wish I had discovered it years ago).
On weekends, I take my meds only when necessary. I power nap in the early afternoon for 15-20 minutes (never longer). The docs tell me the meds dont lose their effectiveness (no dependency/dilutive effectiveness issues), but Im always wary, so I only take the meds when I need them, and when Im petty sure I know know ill need them (when power naps not possible). Never more.
In the end, I've been able to live a very full, rewarding life. I have an amazing family with 3 kids now and an adoring wife. My career is in full swing at the age of 37 with no limiting celings in view. I've admittedly shed tears along the way, coped with bouts of frustration/anger, etc. It has not been easy, but my condition doesnt deter me...and I hope that it never will.
For anyone who has additional tips on how to manage/control their symptoms, please share them. I've always been a believer in best practices--would love to hear your thoughts.
Thanks for listening/reading. I think this is the first time in alsmst 40 years Ive ever laid out my story.....