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Cataplexy??


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#1 Sabrinab116

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Posted 01 February 2012 - 10:20 AM

Okay so I was diagnosed with Narcolepsy without Cataplexy but I'm not sure if this is correct anymore....

It all started when I was walking and my knees would buckle that happened a few times and now I notice when i'm really tired my head feels heavy like its hard to keep up and it just wants to fall over, and my neck muscles ache when that happens.

Then I started to notice in school at random times I would drop my pencil when I was writing. Well what happened last night leads me to the fact that I don't think I'm clumsy anymore that it might just be my worst fear...Cataplexy!

Well just the other night I was standing in my living room holding on to a heavy coke glass and I dropped it but I didn't realize I had let go until the glass made impact with the top of my foot and I just dropped to the floor and started holding my leg, my mom watched the whole thing and came running over to me.
The top of my foot was swelled so my mom being a nurse propped it on a pillow and put ice on it, well long story short I made an unwanted visited to my local hospital. And I remember that right after my incident I felt so tired that I didn't even want to go to the ER all I wanted to do was sleep.

I talked to my doctor at my last visit about the way my head felt and my knees buckling and he just raised my medication dosage and proscribed me with Nuvigil well when I tried to get the script filled the pharmacist told my mom she was not comfortable with me taking it because Methylphenidate has severe reactions when mixed with Nuvigil and teens are more prone to the severe reactions.

I'm not sure what to think anymore, Could this be Cataplexy?? Maybe I need a different doctor because I feel I'm not getting the treatment I need and every time I try to talk to him I get a whatever attitude like he don't care.

Any information or help is greatly appreciated (:

#2 Fish2win

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Posted 13 June 2013 - 12:08 PM

It's possible you could be developing C as you mature. I know some have it younger some don't get it till there older.

#3 Bedtime Barbie

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Posted 13 June 2013 - 01:50 PM

I also have Narcolepsy without cataplexy and I can not tell you how many glasses I have broken! I think it's more that I stop paying attention to what's in my hand because I'm asleep and my mind is elsewhere than that I've lost muscle control all together. I've had the heavy-head neck pain and dropped countless objects, but other than the occasional misstep or trip, my knees have never buckled like that. Pay attention to that for sure and if it keeps up, you really need to make sure your doctor looks into it. Also, if the pharmacist is more concerned about how your medications react than your doctor is, it's probably a good idea to look into a new one.



#4 sk8aplexy

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Posted 02 July 2013 - 09:05 AM

Hmm. 

It does sound like Cataplexy.  The following is only speaking from my own experiences with Cataplexy and an attempt to offer, possible, things to consider.

You should perhaps attempt to gauge at what and when it is being triggered, since it being triggered does involve some emotional aspect; be that something funny, saying something funny, pleasures of any and all sorts, perhaps some frustration or anger, something silly occurring, an unexpected or unanticipated moment/interaction/surprise, etc...  Being 'extra' tired (more than usual), exhausted, fatigued, stressed, or anxious too, will increase the chances of Cataplexy occurring, and once one has occurred the chances of more afterward increase as well.  After having one, or perhaps even during the heavy head feeling, lie down immediately (sprawling out in whatever way you can, or end up) and simply relax, breathe and concentrate on your body (nothing else; clear your mind).  Doing such, for me at least, helps both to dissipate the attack/episode quickly and to simply rejuvenate my strength to an extent.  

If you can begin to grasp the triggers for you/of yours, then perhaps you can begin to better manage it.  I know that perhaps what I'm saying sounds rough and heavy, but the condition can be, and is, such.  Many find medications that seem to help them with their Cataplexy, but there are many who do not find a benefit as well (myself being one of them).  It took years but through much research of the disease and building awareness along with recognition (hindsight and attention) of my own condition/disorder/disease (whatever we call it?) and gradually doing many lifestyle adjustments, some of which are painful and many would likely consider anti-social withdrawal (of some sort, to an extent); I've managed to control my Cataplexy collapsing to occur rarely, although it still can occur and that's just that.  I've discovered a lot about myself through the process and basically have many boundaries which, simply put, I remain within for cautious/safety reasons.  Only trying to offer, possible tips... 

Here's a video on it:

 

And if your doctor is not respecting your opinion nor your interest, looking elsewhere is definitely not a bad idea...

The best of luck to you.