Explaining and describing the Symptoms of Narcolepsy to a Person without Narcolepsy

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Excellent descriptions by cybereaper as found at http://www.talkaboutsleep.com/message-boards/viewtopic.php?p=84503 : "For a real 'explanation, I have tried, in a recent forum with someone who watched an N get fired and wanted to know more, to explain it to them, this is what I wrote and what they said - sort of long, but I will snippet alot. Some of you may agree on my explanation, some may not, but I wanted to at least post my attempts at explaining this.. so you can see the lengths we could go to in order to expain it, but the continued lack of understanding from those who have not experienced it: ------------------------------------------------- > Beyond the physical pain.. the emotional pain suffered by over 120 thousand people is in having to hide who they are everyday. People not understanding that for us.. falling asleep is not good, not funny. That having to hide your emotions 24 hours a day makes for a very lonely life. That living in a perpetual state of horror from nightmares so realistic that it can only be paralleled by the real thing.. every night, every day. I have seen videos on america's funniest home videos with dogs chasing balls and collapsing from cataplexy (a side effect of narcolepsy) and people laughing for hours. They were required to pull those videos when they found out it was an abuse of the animal and not funny. But, we go through it daily. When doctors mistreat us and the same goes for neurologists, psychologists and on and on, who are we supposed to go to? So... where does the pain come from? People look, point and laugh.. oh, you're like that weird guy on deuce bigalow banging his head. You ever wonder if you didn't bang your head if you'd still be ok? You take amphetamines? You must be one of those terrible meth addicts who screws up the lives of little children! You fall asleep all the time? You must need to get more sleep or learn to sleep like the rest of us! If you could, but for one second, imagine this being translated to a blind person: Oh, you're blind? Well why don't you take off those stupid dark sunglasses? You run into things without your cane? Why don't you try looking where you are going next time? You need special books to read? You're wasting taxpayer money. You're blind? Well, you shouldn't ever have a relationship because you will only give birth to blind babies. Sound harsh? I think so. Do people say that to blind folks? Generally, no. But, the narcoleptics get it because it is so misunderstood. I can't tell you how many times I want to break own and cry when I read about a new narcoleptic, just having been afflicted and diagnosed posting questions like: Am I really a bad person? Why do people hate me? Am I insane, am I really losing it? Is there something I could do to be better so people wouldn't make me feel so bad? What can I do to quit being so tired that my husband is going to leave me? Somebody help, I'm going to be fired and I can't stop being tired, what to do? Why does my spouse hate me? Help, they are going to take my kids away, and all I do is sleep more, nothing wrong! THEIR REPLY: Wow, I would think most everyone is ignorant to the real side of your disease. Myself included. That is why I asked, I wanted to hear just a little about what you go through so I could know more. --------------------------- Yes, we do hallucinate in a way that is more realistic than what schizophrenics go through. No.. we are not schizos (well, I may be.. the rest aren't , but we see, hear and feel things noone else can. Imagine your most vivid and wild dream, and then imagine making it a billion times more real! Be fun if you flying, if it was sensual.. suck if it was a nightmare and you were being grabbed and attacked. There is not one narcoleptic with these hallucinations that does not live in fear night to night and board themselves up in their house. They know they have hallucinations.. but what happens when the real thing comes and we mistake it for a hallucination? Yeah.. they are that real. Anyway, thanks for the interest. The intolerance is as sufferable as being treated like a piece of garbage for who you are and the way you were born. I can really relate to a lot of cultural abuses. ----------------------------------------------------- The hallucinations are called: Hypnogogic hallucinations. I cannot find a good definition of it online. But, basically, due to the interference of REM.. our dreams can happen while still in the conscience state. The brain is supposed to shut down to stage 3/4 sleep and paralyze us. Well.. it paralyzes us, but it doesn't always shut down. So what most people see with their eyes closed, ours are wide open and all of our senses are active.. so we hear, smell, feel, see, etc. The big complication is the brain can be lied to, thus hypnotherapy, subliminal messaging, and while we are trying to consciously force ourselves to realize it's a hallucination, the brain, or unconscious, operating separate of the conscious, is taking it all in as real. Not every narcoleptic gets this, and some people without narcolepsy can get this if their REM patterns are mixed up. It's not a big deal unless you let it get to you. Just gotta know that the dark figure standing over you with a knife and a rubber ducky isn't real! LOL.. sounds weird, huh? ------------------------------------------------------------ It does making falling asleep hard though. Here's why: we also have cataplexy. That is complete loss of muscle tone (basically, we lose all control over our limbs and main body, metabolism slows down, and we can be confused for dead. It has happened 3 times I know of.. 1 time to me.. as far as having an attack so severe others think we might be gone), but we are still conscience and wide awake. Now.. this sets in only with heightened emotion. In other words: no big time laughing, joking, smiling, being happy, getting sad, angry, loving.. emotional in ANY WAY. Add to this the fear that we are going to have these realistic nightmares and *poof* - we are now shaking (cataplexy is also a form of a seizure), which makes us even more scared, meaning the hallucination will become more severe.. and the idea that all this would happen is very disturbing. So, Narcoleptics don't want to fall asleep. But, what is the complication with that? We have a sleeping disorder that is going to knock us out no matter what >< - ---After all that, their response is: What is it that causes these hallucinations? I'll be honest, I thought the disease was simply a misfiring of whatever it is that keeps us awake vs. asleep (like an alternator in a car). I didn't realize there was so much more to it. ------------------------------------------------------------------------ That is the best reply I have read yet. It perfectly shows just how misrepresented N is in the real world." -cyber


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