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Living with Narcolepsy

How do I adjust to being awake? I need advice!


#1

How long have I had/experienced narcolepsy symptoms? The reality is since birth. My mom said I always slept more that other babies and would “just fall asleep.” (Note: my mom was an OB nurse for a time, thus had relevant experience to make such a judgement.) She told stories about my habit of falling asleep in my food, at which family and others would chuckle. In retrospect, I do not recall any time in my life during which I actually felt awake without some “help.” Help was in the form of self-medicating with stimulants. Nicotine was wonderful as a teenager as well as some other types of stimulant meds which were harder to obtain. I did learn these were not sustainable ways to stay awake for both legal and health reasons. I just switched to massive daily amounts of caffeine, which never really worked well. I just figured I was lazy and undisciplined because I was unable to stay awake like others and focus/complete tasks. This is actually quite funny because I ranked fourth in my university class, did very well in graduate school, and have worked for some very prestigious companies. By all external accounts, I am successful. I just could never shake the profound sleepiness especially at inappropriate times - studying, oral exams, operating manufacturing equipment, driving. Often I would have to excuse myself and go nap.

Eventually, I was tested and diagnosed ADD without the hyperactivity. Taking Ritalin for ADD was like turning a light on in my head! For the first time in my life, legally, I felt awake. Once we got the dosing right I was on the same dose for about 10 years. The trouble however was the wakefulness never lasted more than a few hours after taking the medication. It was just such a wonderful reprieve not to fight to stay awake for a few hours each day.

After those years I was growing frustrated with fighting to stay awake and we adjusted the dosage and types of medications to fix it. During this time I was experiencing very active dreams. My wife would ask why I drove my elbow into her side during the night - of course I was unaware of this behavior until I about broke my hand trying to put my fist through a wall. After that incident, I slept in a separate bed to avoid hurting my wife and talked with my doctor. He ordered a sleep study, which revealed sleep apnea. Another profound difference: the CPAP machine is amazing! Great sleep and no more hurting my wife or house demolitions in my sleep.

But still profound sleepiness. I think I just eventually gave up fighting the sleepiness and had a much broader discussion with my sleep doctor. My sleep doctor is an expert in a large metro area and after talking for 10 minutes he said I was experiencing narcolepsy without cataplexy. He could have ordered a sleep study, but he said that was expensive and would just tell him what he already knew. He said he sees lots of adults with narcolepsy who were misdiagnosed ADD/ADHD. He worked with my primary care doctor to increase my Vyvanse dosage instead of giving me any “new” diagnosis on my medical record.

The increased dosage actually gave me about 8-9 hours of wakefulness without having to fight sleepiness. After a couple months we increased the dosage to try to get me at least 12 hours of wakefulness.

This was a long journey to wake up. My challenge now, as I no longer have to fight to stay awake, is how do I shift my discipline to actually living instead of being in a constant state of readiness to fight to stay awake? I have said that to myself, even aloud, and as I write it out I chuckle - I never considered the mental energy and discipline it took to remain prepared for the sleepiness fight!

How long does it take to adjust to being awake?

How long does it take to let go of being in a state of readiness to fight sleepiness?

What are some approaches to learning how to plan and complete tasks and projects without ruminating on the possibility of becoming sleepy?

What are some approaches, for lack of a better phrase, to grow up and really engage with life and people?


#2

Dear Narcolepsy Friend,

The best advice I can give is “one day at a time”. You will learn to adjust to these changes. Keep a positive attitude and don’t “dwell” in it.

One thing I learned is my narcolepsy changes depending on other health issues. When I got Lyme’s disease at one point narcolepsy events dissipated for 2-3 months.

Which was an unfamiliar change as I got use to these events happening predictably each day.

Things are pretty much back to normal as I can “blink out” most anywhere and need to lay down for sleep. My fiancee watched me in church and can tell when I’m going in and out.

Be good to yourself, rejoice in your progress and be thankful each moment.

Sincerely,
Ranger