Last week I had my routine visit with the sleep doctor. As usual, he asked about how things were going, like the last four times, I explained that the modafinil doesn’t do anything for me except make me feel fried, and actually seems to cause me major problems with concentration, and like the previous times, he blew this off as not being possible – after all, ProVigil is used to improve concentration. 

He mentioned that I could take another half a pill in the afternoon, if it’s wearing off too soon. No offense, but why would I do that when the issue is not that it is wearing off, but rather it doesn’t help at all? The only effect I can state with certainty that it does have is that it erodes what sleep I am able to get, and taking it later in the day would only make that worse. So instead of taking more of it, I stopped taking it entirely as of five days ago.

The rest of the week was rough, but no rougher than it would have been with the drug, and I actually found myself getting a bit more sleep as the week went on instead of less. Friday after dinner I even went on my first walk in the park in months! 

Usually, I take the medication Monday-Thursday, and the further on the week goes, the less sleep I get, and the worse I feel. By Sundays I start to get a bit caught up on sleep (typically I spend most of my weekend napping to try and recover) only to start the whole cycle again the next (Monday)  morning.

Yesterday, I felt sharper than I had in a long time, and I managed to accomplish some things that I haven’t had the brainpower or concentration for in a long time. Hmmmm… on a hunch, I googled “modafinil opposite effect” and found pages of results that dealt with exactly what I was describing, including a study that actually looked at how the drug saps creativity and slows reaction time for some.

I was immediately pissed off. Why can’t doctors just take what you are saying at face value, rather than assume you are wrong because what you are saying doesn’t agree with what is ‘supposed’ to happen? Especially when there’s already an established pattern of medications having an unexpected effect?

This morning I got up ready to tackle a bunch of projects, from the piles of clutter that have built up around me in the bedroom that I couldn’t bring myself to clean up, to balancing the Quicken accounts, to five hours of yard work that really needed doing. I didn’t have a nap all weekend and didn’t really need one too badly. This is more than just finally recovering from the trip, this is like surfacing from the dark depths of a shut-down brain.

I have spent the past year in a fog well beyond just the drowsiness from the narcolepsy – if it is actually narcolepsy and not just extreme exhaustion from almost half a century of trying to function in a society that wasn’t built for me. I had gradually given up all of the things that make me happy, like hiking and painting, and focused on just trying to make it through each day. 

It’s hard enough being autistic and having to make sure my expression and eye contact and responses look ‘right’ but add to that trying not to look like I’m about to fall asleep, and then add trying not to look like I’m having vision disturbances, severe tinnitus, major reaction time issues, and just plain feeling like crap.  It’s a wonder I am even sane after a year of the medication drama.

This will be my first whole week without the modafinil and it will be interesting to see how much of a difference there is in my ability to focus and stay on track.

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