Coping With Severe Cataplexy

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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.

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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!

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