tnmom

Cataplexy Confusion

5 posts in this topic

Ended up in tears. I was diagnosed with N about a year ago. Noticed about 6 months ago..... Cataplexy. Looking back.... always had these. Getting weak when laughing....burst into tears and tremble when angry. Anyways. Have Dr appt tomorrow for basic N checkup I guess. Symptoms worse and struggling with how to explain it to doctor.

Ok..... let me try this again and ACTUALLY MAKE SENSE!

Last night my hubby got me laughing so hard I could barely lift my arms. The troubling part (because limb weakness has occurred before) was that I literally could not speak. I tried to talk.....make any verbal noise....and just couldn't. It was scarey.....and then absolutely troubling where I endend up in tears. Is this normal with cataplexy? I don't want to over dramatize my symptoms, but I do feel the need to report them correctly to my doctor. He has diagnosed me with N with slight cataplexy but I am worried the Cataplexy along with the N has gotten worse.

I would appreciate any comments or suggestions.

I apologize if I don't make a whole lot of sense. I am struggling to get my thoughts together.....as usual!

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I usually can't talk when I have cataplexy. I can't even change my breathing so I can't take a deep breathe to talk nor move my tongue. There are times I'm screaming at someone in my head hoping they can hear me but I can't even move a finger or toe. It was sooooo scary at first, but now that I know what it is, it isn't scary just depressing and frustrating. I HATE when I can hear people standing over me talking about me and none are talking to me as I lay there on the floor in front of them, especially when something unkind is said. When I come to I never know if I should speak up about what I heard or just pretend I didn't hear them.

I never used to get it from laughing but more and more lately I have found it kick in during laughter. I'm trying not to stress over it but I am honest about it with my doctor. They say people can go years with Narcolepsy without cataplexy and then later in life cataplexy moves in and then BAM then you are a person with narcolepsy with cataplexy. I used to never tell anyone about my cataplexy symptoms because I didn't know what it is, now that I know what it is I feel pretty comfortable talking about it.

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I can totally relate to what you are going through. I also have episodes in which I cannot talk and when the speech returns it is slurred. I cant move my limbs at times or I can't walk properly because my legs are paralyzed or something. It was frightening for me at first. It has altered my life greatly but I am no longer afraid. As you go along you will learn what helps you to manage the symptoms so that the quality of your life is not completely lost.

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I was told there would be a 100% chance of my developing Cataplexy when I was diagnosed with narcolepsy. I was terrified by the idea. 4 years later, it came.

Here's the thing. It becomes expected, and just one of those things, like if you don't eat for a long time, you're going to be hungry. Keep track of what's going on in your life when you have cataplectic attacks. Laughter might actually be the final trigger, not the only trigger. For instance if something difficult (stressful, or upsetting) is happening and you haven't eaten well, or gone to bed at a half decent time, then the laughter could be the final straw, in which case you were already heading there. So if you can recognise the smaller symptoms, you will be able to listen to them and slow down and even stop before it goes that far.

What I'm saying, is it's not necessarily worse, you just might be experiencing a lot of triggers right now, and that is correlating to the degree of the attack. Does that make sense?

Something to think about, anyway as you progress....

Keep your chin up. ;)

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Sleepingcrow, thank you for posting that! I've never heard it explained that way but it makes so much sense.

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