Now, for those people who may not be familiar with cataplexy, it is the sudden loss of muscle tone in response to emotion. It’s just another happy side effect of a brain that does not produce Orexin A/Hypocretin. Because modern medicine is not yet able to replace or synthesize Orexin in the brain, we are left to treat the effects of its absence - namely narcolepsy and cataplexy - separately. Treating the daytime somnolence is as simple as getting through a workday after a late night: caffeine, stimulants, and naps as needed. In fact, most people who have taken Provigil/Nuvigil will probably tell you that it is a miracle drug which, taken in the right dose, essentially cures daytime sleepiness. The cataplexy is a little more complicated though...
There are two courses of action one can undertake to deal with cataplexy. Well, if you count inaction as a course of action, I suppose there are three.
Option 1: Suck it up!
Cataplexy is not painful or fatal, so many people choose just to live with it and avoid listening to “Storycorp” on their Friday morning commutes, as the NPR-induced emotional roller coaster will inevitably cause a cataplectic attack. My incredibly loveable and brilliant doctor suggested I try this option for a while, adding the crucial caveat, “No jokes in the car!”
The obvious drawback of this option is that emotions do not adhere to your, or any, schedule. I gave up on this option when I imagined one day getting engaged. Maybe we’re walking down a scenic beach or sitting in front of a crackling fire. Then, when Mr. Right gets down on one knee, in all my excitement I fall to the ground like a rag doll. Before my brain can tell my muscles that they are behaving inappropriately, Prince Charming has grabbed his coat, made his way to the door, and has already changed his Facebook status to “Single.”
Option 2: Serotonin-Norepinephrine Reuptake Inhibitors (SNRIs)
There is no real simple way to explain what is happening when I have a cataplectic attack, so if you don’t like sciencey jargon, you may want to skip ahead to the next paragraph. If you DO like science, Focus Journal reported on a number of the mechanisms that seem to malfunction in patients with cataplexy. Patrick (2009) saw in a collection of neuroimaging studies that cataplexy had to do with overactivity in the amygdala and other portions of the limbic system. What is boils down to is, “if hypocretin levels are reduced, dopaminergic activity in the prefrontal cortex and anterior cingulate cortex could be impaired. This in turn may allow the amygdala to become overly activated and result in cataplexy.” Low levels of dopamine and noradrenaline allow the amygdala to run wild whenever I have an emotional response, and this triggers a form of muscle atonia similar to that of REM sleep, except I’m awake...
Ok, so back to not science: one of the most popular ways to treat cataplexy is with a class of antidepressants called SNRIs, specifically Effexor. One’s immediate reaction to that is, “SWEET! I get to have control over my muscles AND my mood will improve? [high five nearest person]”. Not to fast...Effexor, in its younger days, was not-so-affectionately called “Side effexor,” because IT SUCKS!
According to the NIH website, side effects include:
- drowsiness
- weakness or tiredness
- dizziness
- headache
- nightmares
- nausea
- vomiting
- stomach pain
- constipation
- diarrhea
- gas
- heartburn
- burping
- dry mouth
- change in ability to taste food
- loss of appetite
- weight loss
- uncontrollable shaking of a part of the body
- pain, burning, numbness, or tingling in part of the body
- muscle tightness
- twitching
- yawning
- sweating
- hot flashes or flushing
- frequent urination
- difficulty urinating
- sore throat, chills, or other signs of infection
- ringing in the ears
- changes in sexual desire or ability
- enlarged pupils (black circles in the middle of the eyes)
And this is the second generation of the drug which cut out all of the “serious” side effects. But Rachel, you say, every drug has lots of side effects. The problem with Effexor for cataplexy though is that one of the more common side effects is insomnia (or as my doctor called it, “early morning waking,” where “early” means 4:30). So let’s do the math here...
Narcolepsy (excessive sleepiness) + Insomnia (inability to sleep at night) = Aw hell no!
In fact, the exhaustion from the insomnia has gotten to a point that my usual dose of Nuvigil (which keeps me awake during the day) is no longer enough. I am back to my old narcoleptic ways, including sleeping at work, at the gym, at friend’s houses, in line at stores, and pretty much anywhere. In other words, option 2 has got to go.
Option #3: Xyrem
Never heard of this one? Maybe you know it by it’s more common “street” name: GHB. Yes, the club drug - Georgia Homeboy? Fantasy? Liquid Ecstasy? G? Yes, that one. Xyrem can be used beyond curing cataplexy and “really feeling the music” as a paint stripper and a date rape drug. It’s a Jack (the ripper) of all trades. So again, some math:
Narcolepsy (excessive sleepiness) + Xyrem (a roofie) = ????
Am scared to try Xyrem? Definitely. However having spoken to narcoleptics who take it and having read commentary on sites like Patients Like Me and in medical journals, I think it might be the right course of action. And if it’s not, I just hope whoever proposes to me someday has the foresight to have me sit down first.
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