I Feel Tired - More on Modafinil and Narcolepsy

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I've moved all of my blogging activity to The Lucid Blog.
You can visit my new home at:
www.thelucidblog.com

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I don't spend enough time marketing The Nettle Blog so the number of regular readers is relatively small and I rarely receive any comments.

So I was very pleased to receive a comment from a Narcolepsy sufferer (Aumriff) in response to my post about a possible Narcolepsy diagnosis and the Modafinil pills I've been prescribed.

You can read it here: Narcolepsy and Modafinil

Thanks for your comment Aumriff. In response to your question I have never suffered with Cataplexy which is probably why this is the first time in 7-8 years of consultations that I've never been treated for Narcolepsy.

If I do indeed have Narcolepsy it's certainly not a typical case.

In my research on Narcolepsy (thank you Wikipedia) it seems that Cataplexy is fairly common among Narcolepts, but not always present. The symptoms mentioned on Wikipedia are:

1) Nighttime sleep does not include much deep sleep, so the brain tries to "catch up" during the day, hence EDS.

Very familiar with this. EDS is a frequent problem and slows down my ability to do just about everything. When it's severe I also begin to lose interest in just about everything - even activities that I usually enjoy.

2) May visibly fall asleep at any moment (such motions as head bobbing are common) .

Never had this which suggests my condition may not be as severe as most Narcolepts. I have however, become accustomed to fighting the urge to doze. A lot of the time I know that if I put my feet up on the sofa I could be asleep within minutes (sometimes even seconds).

I used to do this a lot, but these days when I feel that bad I get up and walk around, drink strong coffee, etc. Fighting the urge to sleep can make me feel ill, but it allows me get more work done.

When I've had a long spell of bad sleep I take time off work and doze in front of the TV.

3) People with narcolepsy fall quickly into what appears to be very deep sleep.

My wife can testify to the fact that I can begin dreaming within moments of falling asleep. She often bemoans the fact that I can seem to fall asleep instantly at night (she sometime struggles to fall asleep) - although it doesn't mean I'm going to feel rested by the morning.

4) They wake up suddenly and can be disoriented when they do (dizziness is a common occurrence)

Not sure about this one. I would often wake up feeling dizzy and ill when I slept during the day which is one of the reasons I stopped taking naps.

5) They have very vivid dreams, which they often remember.

This was actually the first of my symptoms 10 years ago. Not always nightmares, but very vivid dreams that seemed to be unusually long and tiring. It would be common for me to suddenly - during the day - recall a long and vivid dream from the previous night in one, sudden brain dump.

This was very unsettling and I can echo Aumriff's comments about thinking I was going mad.

Another strange effect of the dream recall is the inability to place these dreams in chronological order. I can recall a dream vividly, but I can't remember if I had the dream last night or years ago. This probably sounds strange, but sometime it seems as if the dream has always been in my memory, but I suspect that it is still a dream that I only had the previous night.

I've had a couple of instances of sleep paralysis (usually during daytime naps, hence my reluctance to take them). I know that they're supposed to be harmless, but at the time they're worse than any nightmare.

Coming back to the Modafinil, it's still early days, but the first couple of weeks have left me feeling quite positive. My EDS has been considerably less than usual and the last two days were the first time in about 18 months when I felt NO daytime sleepiness whatsoever. And it's certainly the first time in years that I've had two such days back to back.

I still occasionally have trouble getting off to sleep and I sometimes feel quite 'wired' by the time I get to late afternoon. My pulse seems to be slightly up during these periods (this could be my imagination) and a couple of times it's been strong enough that I would describe myself as jittery.

I get the sense that these are the days when I've slept badly and would usually be very tired, but the Modafinil is masking the effects. I think it's important that I remember that just because I feel alert and awake mentally, doesn't mean that body isn't tired.

Just because I'm having extended spells of FEELING well, doesn't mean that I can start ACTING as if I am well. I'm too quick to take on busy and activity-filled days when I have a good day.

I'll post again in a few weeks and let you know if the Modafinil is still working. If anyone has any questions they'd like to put to me, please leave a comment.