8 replies to this topic

[jsg1206]

I was "officially" diagnosed with Narcolepsy / IH in 2005 after decades of struggle.... I have always proclaimed that I do not have any symptoms of cataplexy, but maybe I don't fully understand the different levels of cataplexy.... Here is my question for anyone out there with cataplexy (I tried Xyrem years ago, but it was horrible stuff, felt like a depressed zombie in the morning, could not function), when I get really stressed / anxious (ex) was yesterday (I am making a sudden career change that will happen by this Friday - basically forced to make the change) - this has been and is extremely stressful. I notice in the morning when I am especially stressed thinking about it, my legs get wobbly / shaking, feel like I am off balance........ might just be from anxiety, but would love to hear from others that have diagnosed cataplexy. thanks Happy New Year to all

[SleepySiren]

I was "officially" diagnosed with Narcolepsy / IH in 2005 after decades of struggle.... I have always proclaimed that I do not have any symptoms of cataplexy, but maybe I don't fully understand the different levels of cataplexy.... Here is my question for anyone out there with cataplexy (I tried Xyrem years ago, but it was horrible stuff, felt like a depressed zombie in the morning, could not function), when I get really stressed / anxious (ex) was yesterday (I am making a sudden career change that will happen by this Friday - basically forced to make the change) - this has been and is extremely stressful. I notice in the morning when I am especially stressed thinking about it, my legs get wobbly / shaking, feel like I am off balance........ might just be from anxiety, but would love to hear from others that have diagnosed cataplexy. thanks Happy New Year to all

My eyes start twitching when i get really stressed or agitated. My knees get wobbly when I am happy or having a good time.When I am excited with anticipation.

[SleepySiren]

My eyes start twitching when i get really stressed or agitated. My knees get wobbly when I am happy or having a good time.When I am excited with anticipation.

But I don't think I have cataplexy

[wisher]

It could be cataplexy, although I'm not sure since one of the words you used to describe it was "shaking". At least, for me, when cataplexy hits, it's a weakness - not a shaking. I pretty much lose control of whatever muscles are affected (in varies in strength, and can include my arms, legs, just my knees, neck, etc.). It feels like my muscles suddenly turn to jelly.

 

I'm not a doctor, and everyone's cataplexy experiences are different, so I can't say for sure either way. What I can suggest, though, is that you just keep an eye on it. See if it happens during any other particularly emotional moments?

[Krickett]

Ive discovered that when i am really pissed off suddenly (thankfully always seems to be when im sitting) my hands an feet are tingly [ins and needles like they are asleep and my knees feel like jello.....onset cata?

[workingmomof2]

I was diagnosed with narcolepsy with cataplexy just this past August 2012. I also have syncope which I had 3 separate tilt table tests for and went to the syncope center at the Cleveland Clinic in Ohio. The syncope diagnoses came 3 years ago. Prior to that I ws diagnosed with epilepsy but that got ruled out with a 5 day eeg in the hospital. So, the N diagnoses has been 10 years coming. I have pinpointed that stress and anger are my biggest triggers. I can feel the attacks coming. My eyes feel heavy, I feel "out of it", sometimes I get heart palps, and I get dizzy. I know when I have to lay down. Then I can't move or talk but my brain is completely awake as I can hear and feel everything. This lasts sometimes up to 30 minutes. My eyes roll in my head and on occasion my head twitches very subtly. My hands and feet are freezing and tingly like they are asleep or not getting blood? When I "come to" I am very tired and sleep a few hours. Sometimes I am better after the sleep sometimes it takes days. 

[Megssosleepy]

Ive discovered that when i am really pissed off suddenly (thankfully always seems to be when im sitting) my hands an feet are tingly [ins and needles like they are asleep and my knees feel like jello.....onset cata?

 

The other night, a car didnt stop at a stop sign and literally pulled out in front of me I was scared then very angry...  my legs felt very warm and fuzzy... like light pins and needles with a bit of warm jello mixed in.  For me that was Cataplexy. If I wasnt on Xyrem I would have lost my legs!

[Krickett]

The other night, a car didnt stop at a stop sign and literally pulled out in front of me I was scared then very angry...  my legs felt very warm and fuzzy... like light pins and needles with a bit of warm jello mixed in.  For me that was Cataplexy. If I wasnt on Xyrem I would have lost my legs!

So definitely Cataplexy then huh? I am on Xyrem as well

[SnoozleBear]

I havent had any diagnosis yet, just have had long term sleep problems, and hopefully will be having a sleep study done soon. Just reading through various threads on here, and can relate to a lot of what people are saying. I've never had an instance where I've collapsed or anything that severe, but I find when I am extremely nervous or stressed, I get spacey, heavy, weak and dizzy. usually I am sitting down, but my legs feel very tingly and 'jello' / unstable when I do stand. My eye sight keeps moving in and out of focus and occasionally my eye will twitch. Also when stressed or nervous, I have a ringing/buzzing in my ears, as well as feeling of pressure or blocked-ness in my ear drums, and its like someone has turned the volume down a little for a few minutes. it usually happens along with the other symptoms (though not sure if this one is related? probably something to do with blood pressure). I feel exhausted after this happens, and usually need to get home to sleep. If I dont fall asleep on the train on the way home first haha!

 

When I laugh, (usually only if I laugh hard) I will sometimes have jello legs and (embarrassingly) may loose control of my bladder, just a little.

Also (probably just general unfitness) but if I go for a jog, or exert myself too much, again - jello legs and my knees will buckle 

Lastly when I walk around or go out - sometimes if I feel very exhausted and will stumble and trip over my own feet, I will feel heavy all over and walk very slowly - and I tend to be less aware of my surroundings - walking into things, accidentally bumping into people and hands suddenly drop things a lot.

 

Can anyone relate to any of this? could some of this possibly be mild cataplexy?