Dhahleah

Help Me Define Cataplexy

6 posts in this topic

I am trying to figure out the degree to which I have cataplexy. I thought - who better to ask than PWNs. I have had my knees buckle, I have had my arm go limp. I've had the tell-tale cataplexy symptoms, but I was wondering if these are also cataplexy symptoms:

Eye and lip twitching

Other muscle twitching (in the thigh and gluteal muscles)

Incessant eye blinking

Weakness (almost pain) in wrist

Throat tightness

These all happen at the times a cataplectic episode would happen (extreme emotion or stress).

Am I on target, or am I over-thinking?

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I would also like to know if those are symptoms as well, I have experienced those during times of stress and also during times of extreme exhaustion. I'm just curious because I told my doctor I've never had a cataplectic episode but if those count then i've had small ones. I also have these moments where I laugh so hard I can't stand anymore so I end up consciously laying on the ground so that I can continue to laugh. I don't know if that counts either?

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I've collapsed while laughing too many times. If I feel a good laughing fit coming on I usually sit down or hold on to something. It's just not worth the risk. :blush:

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I dunno about the twitching and tightness stuff. Cataplexy causes a weakness of the muscles or total loss of muscle tone, twitching is the opposite of weakness and loss.

There is full and partial cataplexy and where it's felt varies from person to person. It's usually felt on both sides of the body equally. Sometimes in the knees or waist, sometimes the arms and wrists and fingers, etc. Sometimes is the neck. Usually full or partial include the facial muscles, especially the jaw muscles.

Here is a link to all the info you could ever want on the subject: (pg 82)

http://med.stanford.edu/school/Psychiatry/narcolepsy/articles/sleep22.pdf

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HI, everything you said about the leg twitches, arm going limp, pain in the wrist.. I mean excruciating pain and also at times in my ankles. Today, I had an episode where my throat locked up on me leaving me gasping for air which scared me causing more emotional stress which set off the cataplexy even more. The doctor claims these are not symptoms of cataplexy but after seeing your post I'm convinced.

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HI, everything you said about the leg twitches, arm going limp, pain in the wrist.. I mean excruciating pain and also at times in my ankles. Today, I had an episode where my throat locked up on me leaving me gasping for air which scared me causing more emotional stress which set off the cataplexy even more. The doctor claims these are not symptoms of cataplexy but after seeing your post I'm convinced.

It seems that there are aspects of Cataplexy that are diagnostic (e.g. knee buckling, collapse following an emotion) and aspects of Cataplexy that are not diagnostic (e.g. muscle twitching, tingling). I have not experienced pain or gasping. Text book learning does not replace the experience of living with this.

 

If you have been diagnosed with Cataplexy based upon collapsing or buckling, then just consider the other stuff as part of the package.

 

Whenever Cataplexy occurrs for me, it is almost always a little bit different because the setting and the context are almost always different. For example, if I am startled/surprised and my knees buckle, I start to fall. If I am then embarrassed by falling, then it is worse and lasts longer. If someone stares at me like I am drunk, then I am also annoyed.

 

I do have odd little twitches in different muscles- sometimes legs or arms or a nostril or an ear. No doctor would diagnose Cataplexy based upon that, but it just seems part of the package and others have reported the same thing. I see those things as annoying little "after shocks" that are just a quirky symptom.

 

If it is happening to you, it is real- bottom line.

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