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Following up on a thought...
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Pat said:
i agree, and how about this one? Gelineau Syndrome was a widely accepted name, and typically INCLUDED the symptoms, not always,
so whatever causes symptoms, the lack of hypocretins, and changes in the brain is still unknown and unnamed.
"Syndrome"
–noun 1. Pathology, Psychiatry. a group of symptoms that together are characteristic of a specific disorder, disease, or the like.
2. a group of related or coincident things, events, actions, etc.
3. the pattern of symptoms that characterize or indicate a particular condition.
4. a predictable, characteristic pattern of behavior, action, etc., that tends to occur under certain circumstances
when they say "narcolepsy", they put the cart before the horse, so there can be a named diagnosis ...
I saw the word "predictable" in that definition and had to laugh- the unpredictability of what my doctor initially called "siezures" regarding times, duration, triggers and severity is what had me sent to a shrink the first time. Seriously, though- y'all have a great idea about outlining the basics from a real perspective for those of us who are new to the "condition" and don't know what to expect. It's scary enough to be unable to trust your body to behave properly and to deal with the anger and frustration of friends and family who wish you'd just "snap out of it"
and doctors who make you think they may be right- you are crazy. (And the heartbreak and guilt watching your mom fight tears and trying to put on a bright face when you have an episode…)
I've gotten more information here than I've found on the medical sites and definitions- all of which are pretty vague.
I know that EDS, insomnia, fractured sleep, hypogenic hallucinations, sleep paralysis, dropping things and cataplexy are all symptomatic of narcolepsy and that it's related to a brain chemical (I've forgotten the name of it) that is lacking, and that all of those are tied up with REM/ dream cycle that comes to early. Does anyone else shake with their episodes and have facial muscle contortions? Do everyone's eyes roll and lose focus? Do others have trouble speaking, slurred or otherwise, during an episode? Do you find yourself biting the sides of your tongue trying to walk through the grocery store? Does it get better or worse with time or just level out after the first few weeks? What triggers your cataplectic episodes? How many do you have a day and how long do they last? (I have between 9 and 52- that's my max so far- individual episodes that vary in severity from a mild weakness to unable to control my body at all in a heap on the floor and lasting from a small "twitch" for a few seconds to several minutes, my longest lasting about 35 minutes during which my muscles are so tense it aches afterwards. Does anyone else experience a hollow "whooshing" sound, like having your head in a vaccuum or in one of those "listen to the ocean" seashells when they're falling asleep? Do you fall asleep driving/talking/waiting at the doc's office, etc?
Because no matter how supportive and understanding your family is, you're still on your own in this- whether you’re diagnosed or trying to figure out what’s wrong- people can't understand what they don’t see and aren't living.
~~
pat noting:
a bit of a repeat here, but i dont want to interrupt the new thread. its all good, and like some of our hassles, it will drop off the page in a coupla days.
personally i like:
"She is just in the spirit"
"The world's dumbest disease"
"having a dumb-off"
and anything that puts people more at ease. i have never been able to get anyone to read one thing about it, "just so you can understand". they simply wont.
This message has been edited by patlittlejohn on Oct 28, 2008 1:37 PM