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Does This Sound Like Cat?


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#1 DeathRabbit

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Posted 06 January 2014 - 02:49 PM

I've always wondered whether I truly don't have cataplexy. There have been some times when I would feel weak in the legs or they would tremble, but it was never really tied to any emotion it seems. However, I think I had something the other day that sounds much more like traditional cataplexy. I was making a fire in my fireplace and it started to burn really hot and I was afraid it might get out of hand. So I started to rush to the bathroom to draw a bucket of water to hand just in case. I started freaking out a little bit on the way there and all of a sudden my legs felt weak and my muscles just did not want to cooperate. I managed to stay upright, but it was like leg power output dropped to 25% and I was sort of clomping around, having to hold onto walls to keep balance, etc. The feeling lasted for 30-min to an hour afterwards. Is this cataplexy or just some weird random other thing?



#2 Hank

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Posted 06 January 2014 - 04:02 PM

For me- Cataplexy is tied to sudden and strong stuff. Like something that is so funny and sudden- I feel the switch flip. Or when that sudden "Oh No" feeling- most often when I a scared for someone else's safety. Just after the sudden "On No"- I feel the switch flip.

 

Your "Oh No" about your fireplace is just the kind of event that would flip my switch.

 

As far a the 30-60 min recovery time- were you still kind of wired about it afterward? Or were you concerned about the possible experience of Cataplexy?

 

For me, when I often feel a bit tired out after I experience cataplexy- and the stronger it is- the longer it takes me to bounce back. Nobody else would notice it, but for me, I can only describe it as a flicker. Like a fluorescent bulb that flickers but remains on- that is the what it feels like for me. Or like coffee jitters without the caffeine buzz.

 

I hope that helps you in figuring out what you experienced. It does sound like it to me.



#3 DeathRabbit

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Posted 06 January 2014 - 04:08 PM

I was prolly still a tad wired for a while, but not for the whole duration of the muscle weakness. I started to wonder if there was something wrong with that beer I had just drank, it lasted so long.



#4 IdiopathicHypersomniac

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Posted 06 January 2014 - 10:00 PM

Yes.  You felt weak in the knees and the fear triggered it.  It can be that subtle.  That's how I experience it.



#5 DeathRabbit

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Posted 07 January 2014 - 03:51 PM

I didn't know you could have cataplexy with IH. I thought it was pretty much an instant N diagnosis if you had witnesses.



#6 Ferret

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Posted 07 January 2014 - 10:09 PM

The handle IdiopathicHypersomnia is the same...the diagnosis has changed to NwC...and is taking Xyrem now.

You've been away for a while Wabbit.



#7 DeathRabbit

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Posted 08 January 2014 - 12:15 PM

Ah okay, lol



#8 IdiopathicHypersomniac

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Posted 08 January 2014 - 05:14 PM

Yeah, they changed me to narcolepsy and put me on Xyrem.  I'm on 6 grams a night now (3g x 2) along with Ambien and Provigil.  It is helping A LOT.  I have a lot more energy now and can stay up for 14 - 16 hours at a time.  The Xyrem is doubling my deep sleep, and reducing my REM sleep.  It seems to block off sleep into huge chunks, so instead of changing gears constantly, the brain stays in each stage longer.

 

The doctor actually saw a cataplexy happen to me in his waiting room.  I was standing up and he said my eyes drooped and it looked like I was going to fall.  The thing is I didn't feel anything.  At that point he referred me to a neurologist and he started me on Xyrem immediately.

 

One of the things I've learned about Xyrem is that you have to go on it very slowly, over months.  Hank was right -- it is a process.  The slower you go, the more success you'll have.  It seems to work by improving sleep and causing a rebound effect all day, but that rebound can cause anxiety.

 

I had so many problems with it at first, but I've learned a few things ...

 

- after taking a dose, wash it down with a sip of water so there's no salt left in your throat.

- empty your bladder before each dose

- no food for 2-3 hours before taking the first dose

- step up by a line (0.25g) at time, not the 0.75 jumps they recommend.

 

The dizziness and nausea eventually settle down if you stay at the same dose for a while.  It is nowhere near as scary as they have made it out to be.



#9 Ferret

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Posted 08 January 2014 - 10:33 PM

That is such GREAT news IH! You've really been on the rollercoaster with different treatments and I'm pleased that something is finally working for you.
May 2014 be a wonderful year for you and the first of many more.

#10 IdiopathicHypersomniac

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Posted 09 January 2014 - 12:25 AM

Thank you Ferret.  Your comment means so much to me!  I just wish this medication were available to everyone out there.  Is it available in Mexico?  Maybe you can get some too.



#11 Valerie508

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Posted 09 January 2014 - 06:18 PM

I also wonder if I have cataplexy... I'm just so unsure about what is normal and what is abnormal for people to feel or experience... I mean some people say you would definately know if you ave cataplexy, but I can't tell if I have it or not.. does it only concern your limbs? like when you fall down sometimes because your legs give out? or is it related to speach? or is it a certain way you fall asleep? i just don't know what it is...

I've been confused about it as well.



#12 sk8aplexy

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Posted 09 January 2014 - 07:12 PM

I'll chime in with my descritiptions and experiences with it, to an extent.

 

"does it only concern your limbs? like when you fall down sometimes because your legs give out? or is it related to speach? or is it a certain way you fall asleep?"

 

Cataplexy can be a minimal loss of muscle tone, for instance a drooping of the head or jaw as the muscles briefly weaken or loss there strength

Cataplexy can also be more severe, being a complete temporary muscle paralysis, a complete loss of muscle tone (0 muscles/strength/control) throughout the body.

Cataplexy is triggered through emotions related to a vast variety of things, be it something pleasant to something unexpected; usually interaction and/or engagement is involved.

 

With minimal Cataplexy it can at times be hard to even note occurring, for instance just dropping/drooping the jaw momentarily or perhaps while laughing you feel your face sort of spasm oddly along with perhaps a tilting of the head forwards, and speech can be effected (for instance either sort of mumbling or having to sort of stutter, to repeat clearly). 

Minimal Cataplexy can be just a flickering of a muscle, or muscles, and severe Cataplexy can be like a complete short out of all muscles in the body.

With more severe (involving collapse) Cataplexy, the entire body becomes near immediately/instantly like a ragdoll, completely without muscles nor reflexes.  This is the fall down, legs giving out.

Severe Cataplexy, tends to involve a period of time that the person is in a complete temporary muscle paralysis.

Some persons actually fall into deep sleep during such episode/attack.

For some, the period of time in paralysis is very brief (5-20 seconds).

During Cataplexy with complete temporaray muscle paralysis, the person can think clearly, can hear and sometimes see; completely conscious, unless they fall into sleep.

 

Now, there are endless in betweens and beyonds, in regards to how I describe it above as minimal and severe.  (By the way, the minimal and severe that I descirbe, is just how I describe it).

A person can collapse because something was funny, yet they are completely laughing and moving.  As a kid, while tickled in the belly, my arms wouldn't respond and were entirely limp, I could not push away the hand but I could roll around and I could laugh.

 

Know, there is such a wide range of variations and degrees of differences, it is not simply understood and/or/nor recognized; living with it forces one to adjust to it, whether they note and/or know it.   

 

Each person experiences it differently, in both what triggers them and how their body reacts (how the Cataplexy effects them, explained above).

For instance, some of us are triggered by trying to tell a joke, or just saying something funny to another person (that emotional pleasance is the trigger), and others of us are triggered by being asked for change on the street (that emotional frustration with both desire to help and need of money) [that could be just I am triggered by that one?].

Other examples, being 'really' frustrated and/or angry, being 'very much' excited or even anxious, getting a break away in a hockey game, being unexpectedly or expectedly smiled at/upon, laughing in response to something funny, watching something funny, etc..  

I think there are many persons who are so frustrated with it, when it happens, that they actually escalate the effect of the Cataplexy  (I know I had my few bad episodes/attacks, fighting/resisting it and causing it to get worse). 

But, when you don't know what's going on, that's definitely understandable, and it is frustrating to not be able to experience certain emotions as freely due to collapsing or your head drooping.  

Triggers are vast and complicated. 

 

Cataplexy, like the other symptoms of Narcolepsy, can come and/or go, it can regress and/or progress, it can dissapear, and it can also appear; some people seem to have it from birth, some people grow into it in their childhood/teens/early adulthood and later adulthood, some people seem to outgrow it.  It can fluctuate in how it effects one, be it what triggers them or how their body reacts when triggered.

 

There are no rules, nor book that tells it fully.  It is what it is, for each of us that lives with it.

 

Hope that helps somehow.?



#13 Valerie508

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Posted 09 January 2014 - 08:39 PM

That's very helpful, I'm still unsure... but I think I might have it to an extent. I try to avoid emotional situations as best as I can, because I can't handle my emotions.... Is that normal? I know when I cry my body gets tingly, so I try to avoid crying.



#14 sk8aplexy

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Posted 09 January 2014 - 10:39 PM

I don't know what 'normal' is, or whether such actually ever exist..?

Cataplexy is in an odd way, tied to intensified emotions or certain emotional states. 

As I mentioned, it can at times be hard to even note occurring.

Which is to also say, Cataplexy can be for the person experiencing it as well as for those around them, near to invisible.

The person experiencing it, feels anything from a slight tingling or flickering in any part of the body (lips, jaw, cheek/s, face, head, neck, shoulders, hand/s, wrist/s, arm/s, leg/s), it can be a strong sensation of waves passing through the body or an area of the body.  Yet remember it is in response to, or during some heightened, emotion.

It can happen when you'd least expect it, and not happen when you'd totally expect it to.

Many or more likely all people with it, adjust unknowingly, over time (to a point). 

I was 28 before I knew what it was, but as a kid I knew something was odd, at 20 I knew I definitely had some sort of condition, and by 25 I knew my common triggers and reactions, at 28 I did an internet search of "laughter AND paralysis" to discover the word.

 

Regardless, it is good to be aware of Cataplexy, I think fearing it though can be bad and possibly intensify it at certain moments.  Hope that doesn't sound too weird.

Trying to just say, you'll know it, when/if, it hits.  And I hope that you never have to experience it in any bad way.

Know, as long as you don't get injured in a fall and/or you're breathing is not obstructed, it is said to be harmless; it is some sort of intrusion of the REM (muscle) atonia, as while dreaming the body protects itself causing paralysis, for whatever reason heightened/intensified emotion/s triggers the switch causing muslce atonia during the wake state...

 

Many doctors don't recognize nor understand it, unfortunately.

 

I'll add it is quite unpredictable.

Although, for some once you've recognized and understood it (that being Cataplexy, then your own triggers and sensations of it), you can begin to know the when and why to them occurring .

My advice for anyone who experiences it in a severe form, it's important to not fight nor resist it, be calm.  Learning about the condition and then recognizing your own individual limits and boundaries, allows one to begin staying within them and in time be comfortably able to cautiously step outside of them; is key.



#15 Valerie508

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Posted 11 January 2014 - 04:03 PM

Thanks, I'll try not to think about it so much, I dont want to accidentally trigger something by over thinking and worrying.

#16 Hank

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Posted 11 January 2014 - 07:40 PM

That's very helpful, I'm still unsure... but I think I might have it to an extent. I try to avoid emotional situations as best as I can, because I can't handle my emotions.... Is that normal? I know when I cry my body gets tingly, so I try to avoid crying.

 

What do you mean by "can't handle my emotions"



#17 Valerie508

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Posted 14 January 2014 - 01:01 AM

Ive been really emotional these past couple of years where my narcolepsy has started to progress... Which I'm guessing is due to my early adulthood hormone levels or whatever... Or maybe I'm just so tired that I can't control when I get aggravated, I have almost zero patience... Also I just cry so much now ive never cried so much in my life.

#18 DeathRabbit

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Posted 14 January 2014 - 02:54 PM

Ive been really emotional these past couple of years where my narcolepsy has started to progress... Which I'm guessing is due to my early adulthood hormone levels or whatever... Or maybe I'm just so tired that I can't control when I get aggravated, I have almost zero patience... Also I just cry so much now ive never cried so much in my life.

I know that feel. Sometimes I get so irritable I just want to tell all my friends to eff off for no reason. I hold it in, but I really wish I didn't have to feel like I was holding back all this unexplainable anger constantly.



#19 Valerie508

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Posted 14 January 2014 - 04:09 PM

Omg exactly, Ive been known to just ditch people.. I'll be best friends with someone one day and then the next I'll be like *BEEP* off I don't want to be your friend you annoy me... Then a month goes by and I'm fine with them. Also I didnt think it was possible to become more emotional but my doctor wanted me to try provigil... I only took it for a week and a half and my mom told me to stop taking it because I was a confused, sleepy, emotional person who didnt feel connected to my own body. Have you ever tried provigil? Am I the only one who had these side effects?

#20 DeathRabbit

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Posted 14 January 2014 - 04:48 PM

Provigil just made me antsy and feel like I was losing touch with reality. So I guess that is kinda similar. I think a lot of the N treatments don't work well on nutjobs like me :(