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Thank you for visiting!

Friday, September 10, 2010

Neurocurious? I am ;o)

It may appear so, but I have NOT forgotten: I promised to share some thoughts Matt and I have had about just how his brain is being derailed in a way that causes him to collapse in a cataplectic lump o' humanity. In an unexpected way on a recent weekend, a new piece of that very complicated puzzle called "Matt's narcolepsy" may have revealed itself.

Oops! I once again get ahead of myself and forget my manners. What an impersonal greeting! Please accept my apologies and allow me a short detour to remedy that moment of rudeness:

Hi there. I've missed you! It's been awhile since I have had a chance to check in. I was away from home, separated from my computer and in full-on care-taking mode, aiding my Dad who is recovering from surgery. Dad is doing better and I am back home with my Sweetie and the pup. Yay on all three counts!

OK, now that we've said a proper "hello", lets get to work on that puzzle.

So far what we have is mostly some nice edge pieces and a few corners. Hmmm, even the most cursory examination indicates that once it is complete, this puzzle is going to be a very revealing picture of Matt's brain. And despite it's rogue activity in the sleep arena, it is a pretty awesome brain if I may say so myself. Yeah, I know I am not the most objective person, but this is my blog so we will go with that ;o)

This new puzzle piece fell out of the sky a few weekends ago. We were hanging around the house, enjoying the beautiful weather when Matt started having uncharacteristic, repeated attacks of cataplexy. There he was at the computer, playing a game and suddenly he would feel an attack coming on. The weirdest thing about this was that this is one of the few activities that occupy Matt's attention in such a way that he never has attacks while doing it. Seriously. Never.

I confess I was pretty concerned, worried that what we were observing was the beginning of a worsening of Matt's symptoms. The night before we had a couple of friends over for dinner for the first time in months, and he had a long, uncharacteristic attack then also. It seemed odd. He hasn't had an attack around our friends in quite some time. And then the next day he was suddenly having these attacks in the middle of a normally "safe" activity.

Confession: I tend of hang on, white knuckled, to the hope that Matt's symptoms have hit bottom. That they will not get any worse. I have lost so much of him already. We are so limited in how much we can do together. And Matt is so limited in the number of things he can do and be fairly confident that he will remain awake and able to move. This disease sucks. The thought that it will get worse? Very, very frightening.

So, this weekend was sick-to-my-stomach scary.

And then I started to get a migraine. No surprise, I often get them when exposed to flashing lights or repeated auditory stimuli. Matt observed that the low frequency sound vibrations caused by the planes flying overhead was probably triggering my headache.

Oh yeah, did I mention that there was an Air Show being held just minutes from our house?

Yup, there were planes flying over our house all weekend long. Droning overhead during the time we were attempting to share a meal with our friends. Zooming by during the time Matt was playing his computer game. Flying around during all the times in between.


That sort of thing is called a variable. Something that is different from one "experiment" to the next. Or, as in this case, something that was different from one weekend to the next. Something that made this one weekend different than many weekends past during which Matt didn't have attacks while visiting friends or playing his game.

Of course we may be deluding ourselves. The increase in attacks may have nothing to do with the auditory stimuli from the jets flying by, but the next weekend, when the planes were gone, Matt was back to "normal": no attacks during his game play. And we haven't had a repeat of that increase in frequency of attacks yet.

So, yeah. I admit it's kinda lumpy and poorly defined, but I think this piece fits in the puzzle somewhere. Heck, it may even turn out to be one of those important bits, a piece that allows one to finally put an entire region of the picture together.

Until next time, sweet dreams!


  1. Hi, I'm Ben. I have been hanging on your every word since the little tv show. I have an alarming level of cataplectic activity(non-activity?)Somewhat unlike your husband I seem to have the most disturbance by my symptoms at work rather than at home. I cannot say hey look at this spreadsheet without an infuriating fight to try to speak legibly or the terrible pause while they wait for me to get to the point that i can get it out. I text and email alot. I participate in weekly bible study related activities as a part of my faith,A wonderful loving group of people, but I am having the hardest time with being able to enjoy that. I am so petrified by my need to keep calm and to myself. I can't talk to anybody or it comes on. I just sit there like a lump, maybe I'm too proud/ scared to let people see me like that? You're right Trish, it sucks- You are right by the way about the frequency/ resonance from the planes affecting Matt. I have different responses than Matt for sure, but planes, power lines, electric motors, laptop fans, certain movement types within the peripheral field, all have an adverse affect- not the same as an attack, more of a stupor and an increase of attack frequency-

    Other than the narkie side I do have a tremendous brain, and would like(quite desperately) to meet, or talk to you and Matt.
    I Live in Hillsboro 503 572 9011-,,

  2. Hey, Trish --

    You know me, I'm down here in Sacto and I'm also narcoleptic, which gives you plenty of hint so I'll leave it there. Been poking in from time to time, was good to see you guys doing various media stuff and I'm glad to hear that Matt's meds are treating him relatively well. Thought I'd chime in here, since I've been having similar stuff, actually.

    For me, I've noticed over a long time that very poor (obvious but fast flickering, say) light quality and really droning background noise both knock me down really, really strongly, I go from upright and ok to wilted and barely moving pretty fast. Not sure what the various factors in it are, but stuff that is consistent and hits certain noise or light levels really makes me both drowsy overall and increasingly weak, much more prone to near-collapse for a while afterward. I used to volunteer at a place that had even worse than normal bad fluorescent lighting, and 2 hours in that building would make me on-and-off limp for about the next 24 hours, occasionally severely twitchy in between.

    The research world is really focused on the emotional triggers, but I often really wish they'd look harder at some of the other stuff, too. If this is indeed what I've got, I'm afraid the triggers appear to be far more varied -- the stuff that makes my day-to-day existence hardest is frequently about some incredibly trivial detail, while I think my current sleep doctor has the impression that I'm probably just fine most of the time unless I feel some major emotional trigger -- meanwhile, so far it's mostly been being startled or eating that are the only really clear connections to, say, falling on my face. So I should, uh, buck up and take my nuvigil, which he says gets most of his patients back to work and doing fine. :P

    They're all looking for a textbook case, and I suspect the textbook is incredibly narrow.

    I do also find that the more I can focus on something completely neutral, the better, and the less other background, droning-type input I can take in simultaneously, the more I can shake a sketchy-feeling time. That's hard to find, though. Standing in line somewhere less-than-ideal may ruin a day and a half, and spending time with friends only works if there's little or no cross-talk. Constantly controlling my environment is tiring in itself, honestly. So I'm not getting out of the house much these days.


Thank you for stopping by and for sharing your response to this discussion!