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Saturday, November 27, 2010

Dealing with Cataplexy

Todd Fischer, Feb 2010

I’ve always thought I got off a bit lucky with my narcolepsy, as I was not suffering from cataplexy, a condition that often goes hand-in-hand with the sleep disorder (70% of narcoleptics have it).

However, the symptoms as usually described appear to only be the most serious cases and not the norm. Serious cataplectic attacks can essentially put people into waking comas where their muscles go stiff or loose, causing them to fall to the ground unable to move, but awake and aware.

The thing is—doing more reading on the subject—I found that cataplexy attacks are not always so catastrophic. They can be more subtle, such as leg spasms, dropping things for reason, small head shakes or nodding, a loosening of the jaw or slurred or troubled speech.

Except for the loosening of the jaw I have been exhibiting all those symptoms for a long time now, but just thought the head nodding was micro-naps, the slurred speech caused by tiredness, the dropping due to carpel tunnel.

It’s been getting worse though. My energy level has dropped exponentially, and doing one chore can leave me sweating and wheezing for breath (say, taking a full laundry basket down two flights of stairs). I’ve been trying to get on the exercise bike to combat this, but since it’s not actually being caused by poor cardio I am uncertain it will have any effect.

I try to be mindful of my hands, but the moment I don’t think about it is when I spill pills all over the floor, or send my cup flying off my desk. This is why I dropped a bottle of beer in a friend’s campsite, soaking their tent (the bottle erupted like a geyser), why I am afraid to hold babies, and why I would not act as a pall-bearer at my father’s funeral (even back then I knew something was wrong).

The societal fear of making a spectacle of myself is making me even more leery of leaving the house. I can control my own environment much more when I am by myself (or with just Mel), and I don’t have to worry about embarrassing myself by nodding off at a concert or dinner, spilling a drink, having trouble speaking to a waitress or having to dash to the bathroom for a half an hour.

It also makes me more reserved. Cataplectic attacks are usually brought on by emotion, and my aloofness and coldness have been remarked on by others. I don’t tend to feel highs, and rarely get excited. I remember one Christmas when my brothers gave me a chest they had built themselves and they were hurt by my apparent lack of appreciation. In actuality I loved it, but I found myself unable to give them the reaction the gift deserved. Thinking about incidents like this now, I can’t help but wonder if I have unconsciously developed a survival technique of dampening my emotions to fend off cataplexy.

For those who are interested, here is some information on cataplexy:

It is important to know that almost 70 percent of those affected with narcolepsy also experience cataplexy. This complication causes a sudden muscle weakness while the person is awake. This may lead to sudden head nodding, difficulty forming words or speaking, dropping things out of one’s hands, and even buckling of the knees, potentially leading to a fall. These attacks may last for several seconds or up to a few minutes, all while the person is fully aware of their occurrence.

Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually the speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. These attacks are triggered by strong emotions such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter. Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.

Arm weakness
Sagging jaw
Drooping head
Slumping of the shoulders
Slurred speech
Generalized weakness
Knee buckling

When cataplexy happens often, or cataplexy attacks make patients fall or drop things, it can have serious effects on normal activities. It can cause accidents and be embarrassing when it happens at work or with friends. For example, narcoleptics may not pick up babies because they are afraid they may drop them.

A person's efforts to stave off cataplectic attacks by avoiding these emotions may greatly diminish their lives, and they may become severely restricted emotionally if diagnosis and treatment is not begun as soon as possible

Cataplexy in severe cases can cause vital signs to be hard to detect without a continuous auditory pulse oximeter. As an anecdotal example, one Allison Burchell, a sufferer of severe Cataplexy, has been pronounced dead three times.

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