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Thank you for visiting!

Sunday, August 22, 2010

The plane, the plane!

Now that title is going to confuse any of you out there who are younger than about 40. Here's a hint though: it is an announcement that aired every week at the beginning of the TV program "Fantasy Island". When you heard Tattoo shout "the plane, the plane!" you knew that the show was about to start, and that someones fantasy was about to take them to places they had never imagined.

Living with narcolepsy and cataplexy was certainly never something Matt or I fantasized about (I think I'll keep those things to myself for now ;o)  This episode of our lives however, has taken us to some places we could never have imagined.

One intriguing place we travel to frequently is the land of "what in the world is going on in Matt's brain". Yeah, I know that many of us ask that question about our significant others from time to time, but for us this is not so much a "what were you thinking?" type of question.

We really do toss around ideas about what might be going on in Matt's brain --what has happened to the neural integrity and the synaptic circuitry of his brain to disrupt his sleep and wake cycle in such a massive way?

For one type of narcolepsy, these questions are pretty far along in the process of being answered. Depending on what scientist is calculating the statistics, roughly 65-90% of narcoleptics have the disease due to what is likely to be an autoimmune assault on cells that produce a neuromodulator called hypocretin (or orexin). If you are interested in more information about this etiology, there are lots of research papers out there that explain the process and result much better than I can here.

So, what about the other 10-35% of narcoleptics? There isn't nearly as much research or as many answers for these individuals. But Matt has been giving this a lot of thought (in his "spare" time) for the last couple of years. And, lucky for me, I enjoy tossing ideas and hypotheses back and forth with him. Almost as exciting: this is one activity that thankfully does not put him to sleep :o)

Is it a coincidence that Matt is a neuroscience researcher? That I, too, have a doctoral degree (in physiology) with my doctoral and post-doctoral research all focused on the activity of the brain? You know, I don't think so. After all, my man Grissom would say "there's no such thing as a coincidence".

So here we are, spending some of our "fun" time together debatingabout what in the world is going on in Matt's brain. Yeah I know, it's a geeky thing, but discussing neuroscience is something we both love to do. That said, for two people whose only "knowledge" about narcolepsy (and yes, I do use the term "knowledge" very loosely) was gleaned from fictional characters on TV, in movies or books, neither one could have anticipated that this particular scientific mystery would become such a huge focus of our life together.

It's actually a lot easier now than it was the first few years of Matt's illness, particularly the two years Matt struggled to get a diagnosis and the first year of treatment. In those days we were pretty overwhelmed with the chore of trying to adapt to this new reality. And Matt complained. A lot.

To be fair, he was pretty scared. His body and brain had turned traitor on him and he struggled just to do the things he absolutely had to to get through every single day. The disease really claimed our lives completely during that time.

I used to think of it as "all narcolepsy, all the time".

Matt seemed incapable of having a discussion with me about anything but how tired he was, or what weird thing his body was doing now. It's a bit of a relief to be able to focus on other things now. Even if our main focus tends to be that singular question: "what is going on in Matt's brain?".

So, it's become a bit of a thought puzzle. We take it out several times a week, look at the pieces we have, and add any new pieces that we've found since the last time we tried to put it together.

I'd like to talk more about the puzzle next time, but let me leave you this to ponder:

Matt had a terrible couple of days on Friday and Saturday. He had many more attacks of cataplexy and needed more naps than he usually does. Why did Matt have more attacks?

This is the very question that led us to discover a new puzzle piece.


  1. hello, nice to read your blog! I am also very interested in what causes me to have crappy narcoleptic days and what causes me to have good ones. I have a feeling there's a whole bunch of things involved.
    I don't know if Matt experiences the same, but i always get slightly cataplectic in churches and museums for example. For years I have been wondering wether that is because I don't like to be in those places or maybe it is because there are large bodies of stale air to be found (or some other biological reason).
    I run a small IT company and I'm hoping to someday soon reach the day that I can spend some resources to develop an online application to start gathering data in this field. Not just for narcolepsy, but for many things. In particular I'm interested in the whole idea that things that we might not know about now are causing certain illnesses or behaviours. These patterns could be found in a very non-scientific way by asking enough questions to enough people. One day, sometime hopefully soon i'll be able to make it happen :)
    In the mean time, consider yourself added to my rss reader. Bring on the interesting thoughts :)

  2. Hey Trish-
    Your reference to Grissom did my heart good-I really miss that I was able to finally see the Nightline program over the weekend (dvr is a narco's best friend..ha!) I see what you mean about the narrow focus, but still it may help someone else who may be having similar issues identify the problem. Good luck in your research-we need all the help we can get!!!!
    Keep on keepin' on!

  3. Do you remember, when you were a small child, being tickled by someone to the point where you were just completely incapacitated, unable to fight them off or even to talk? All children experience this, no? Well, at least to me, that is EXACTLY what C feels like. And I can't remember where I read this, but I heard it said that this reaction is caused by the same brain mechanism as C. Do you know anything about this?

    I also wonder why antidepressants are so effective against C. I take Effexor and it completely "cures" any C that the Xyrem doesn't take care of. I've questioned my docs about this but the answer is always, "We're not really sure." Any ideas?? Thanks!!

  4. Thank you all for your feedback! I am starting some dialogue (is it a dialog is it's in a blog form?) about brain chemistry. It is something that all of us appear to be curious about. I need to go over some papers about N Tx to address N and C directly but can say Matt also found an SSRI (similar to Effexor which is an SNRI) to be helpful in preventing cataplexy. I just don't remember off the top of my head whether it is just serotonin or both serotonin and norepinephrine which are involved. Let me know if you are interested in more -- I would be happy to do some re-reading and give myself (and anyone else) a brief refresher! :o) Hugs!


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