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Coping With Severe Cataplexy


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#21 Hank

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Posted 05 January 2014 - 11:35 PM

The text book descriptions of Cataplexy don't accurately describe the experience. When I read the definitions, it did not sound anything like what I experience- but sure enough- I actually have Cataplexy.

 

Most of my full collapses have been sports related, so I have had to give up some of the things that I have enjoyed for safety reasons. When I skied, when I felt thrilled by the speed and turns, I would crash. It would take me about a minute or so before I could move after falling like a ragdoll. Then I was just fine.

 

I don't skate anymore (in-line or ice) because as soon as I have too much fun, I go down. I broke my arm after my knees buckled- that was the last time on skates.

 

But after each episode of paralysis, my body turns back on and I am just fine. It really is brief and it really is transient. Its like I have an on/off switch that can be flipped and I cannot stop it. My body can just turn off and I am aware of it from the inside.

 

After exercise, my legs do get wobbly. And if I have a sudden burst, like when chasing after a dog, I do have sudden weakness. But, for example, after a regular run, my legs will wobble after I finish - rarely during the run- and then it passes. I did a triathlon and didn't wobble until after the finish line.

 

So, the fact that he had 3 horrible days after an active Halloween night just does not seem to fit with Cataplexy.

 

And you say that laying down will help it stop. Well, when it happens to me- I just go down. I do not have the opportunity to find a comfortable place. The last time it happened I was walking and I was glad to stagger from the pavement to the grass before collapsing. I generally drop to my knees and then fall over onto my right side.

 

Maybe others will have more to offer- but something just doesn't seem to line up in the description.



#22 Ferret

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Posted 05 January 2014 - 11:45 PM

Hypokalemic Periodic Paralysis

 

Please bring the above three words to your Doctor's attention. Please click on the link that Hank provided or on the links much further up this thread....or put those three words into Google to do your own research.

I'm sure that both Hank and I sympathize with what your husband is going through and we wish him a speedy diagnosis and treatment plan...we just don't think it's cataplexy. There is a complete lack of the emotional trigger usually involved.

You should also be aware that certain pain killers may trigger a Hypokalemic Periodic Paralysis event...as may exercise and as may a high carb meal.

Good luck!



#23 Zolmix

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Posted 06 January 2014 - 11:48 AM

Thank you gentleman for your insight. Will keep you updated once we finally get scheduled.

#24 Zolmix

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Posted 13 January 2014 - 12:07 PM

The Sleep clinic had a cancellation so they gave us a chance to jump on that appt or wait until mid Feb. So we jumped on it. 

 

After about 45 minutes of showing him videos discussing everything he said it doesn't sound like narcolepsy or cataplexy but he can see how it could be based on the videos. My husband has the big full sleep test with the MSLT scheduled for the 23 & 24th of January.

 

If the test comes back negative or inconclusive or ????   then they will either do a lumbar puncture or just put him on one of the meds that are known to treat just Cataplexy. . . . .Not excited about either option.



#25 Ferret

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Posted 13 January 2014 - 11:04 PM

Glad to hear that you got the tests organized.
So, Zolmix, because of a post today in Diagnosis (Big Week...cataplexy that lands me in the ER...by squirrel) I want to ask a direct question.
Did your husband stop taking ANY medication in the two weeks prior to the start of these "cataplexy" episodes???
If you read the post I'm talking about today in Diagnosis and above (in this thread)from justdroppingby, then you'll understand why I'm asking.
If he has stopped taking a certain medication, it would be helpful to other readers to be aware of the consequences.
Best of luck to you.

#26 Zolmix

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Posted 30 January 2014 - 12:40 PM

We had the testing done on the night of 1/23 and the MSLT done the following day. (Horrible as I had to go get him in the nasty snow storm that Michigan received!) We are still awaiting test results. The tech or PA said that they would call him within the next 2-14 days with results.

My husband was healthy and on no meds at all until his hospital admittance in Feb 2013. He is now on Blood pressure meds. At the initial consult the doctor did ask about the flu shot and we don't believe in the flu shot. The only shots he had gotten was the a series of shots for work I think they were the Hep A and Hep B series due to him working with fecal matter at work.

When they were searching for answers and we were going down the path at the time of eplisisty they put my husband on the topiramate and he had non-stop episodes for like 24 hours. (Yes he has been cleared of it possibly being eplistiy) In our hearts my husband I truly believe that it is a pinched nerve in his back but the doctors so far are not willing to listen so they keep sending us on these wild goose chases. Now they are chasing down possible Cataplexy.



#27 sleepingmonkey

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Posted 07 April 2014 - 04:06 PM

But after each episode of paralysis, my body turns back on and I am just fine. It really is brief and it really is transient. Its like I have an on/off switch that can be flipped and I cannot stop it. My body can just turn off and I am aware of it from the inside.

 

First, just like to say that was beautifully said!

 

Although I was ALWAYS very tired, and took many naps (because my schedule allowed for it; lunch breaks: zzz in car etc.), I never fell asleep apropos of nothing, or out-of-the-blue. Except, if I was driving for more than a half hour, and then I always became incredibly sleepy and had to pull over for a quick cat nap. I had tests for everything over the years, and I think my doctor was beginning to think I was a hypochondriac. Ditto for my parents. Lupus, lyme's disease, thyroid, hormone levels, depression etc. all turning up absolutely nada. I spent A LOT of time googling things in recent years, but I was always searching for "dizziness while laughing" or something of that ilk, so I never saw anything. Then, my foreign friend, reiterated "dizziness while laughing" as "muscle weakness with laughter" and I thought: HMPH! So I did a google search and came upon all these links and videos and I immediately knew I had C, and ALSO N. I did the overnight sleep study as well as the MSLT and sure enough, I fell asleep in under 2 1/2 minutes during each session, and the last session they didn't even do because it was that evident.

 

That being said, I don't have SEVERE C. My doctor says overall, with N & C combined, he would put me at about a 7 on a scale of 1-10 in terms of severity, but being that he doesn't even have any other patients with C (even though he sees many N patients), and all that I've read here, I would put myself at a 5 or 6. When it happens - and it's often now - it is extreme, though quick. It is a total body collapse for me if I'm standing, and a total upper body collapse if I'm sitting. But, it's over in 5-30 seconds; usually on lesser end.

 

I am VERY interested to know about this "rebound cataplexy" you guys are referring to! I have pretty recently taken myself off of adderall, which I was taking 3-4x per week (30 mg time-released), and then weaned myself to just ingesting the beads in small amounts when needed; I'm now on nothing. It's been 2 months (this includes the weaning) of way WAY more frequent and longer-lasting episodes. Also, while previously only laughter was a trigger, now it's also just plain ol happiness, sadness, tears, anger, fear, shock etc. If I raise my voice at my son (anger, guilt etc.) I will fall and I'll lose my speech. However, if I can push the emotion from my mind (with anger this is easily done, with the others not so much), I can stop it almost instantly with a few second delay.

 

So - long-winded - how long is this rebound sh*t going to continue?!

 

eta: Another thing! I would regularly explain to people that I'm afraid of heights. In my mind, I wasn't "terrified," however I was scared enough that it would turn me into a rag doll. At the Grand Canyon many years ago, I cried and fell when my then boyfriend joked very close to the edge. Over the years people said I was dramatic and I should just fight through my fear and I'd be fine, that I wouldn't fall. But, me fear was real, because I COULD HAVE VERY EASILY REALLY FALLEN. I also have ALWAYS been extremely irritable when I don't get sleep. My parents thought I was a complete lunatic when I was in high school, throwing open windows yelling at our barking dog, tearing into my brother's room in the middle of the night because he was snoring too loud...shoot, even ticking clocks, or basically any noise that I was not in control of would send me over the edge when I was trying to sleep. With meditation (twice a day), this has changed, though I'm still a mess if someone tries to wake me from sleep. WATCH THE EFF OUT because I'll be throwing elbows!