the narcolept

my existence, punctuated by irregular sleep patterns, the whimsy of cataplexy, and other cryptic curios

[thenarcolept]

how long since you knew you had narcolepsy?

I'm not sure when this question was asked, so I'll answer more completely...

I suspected I had narcolepsy for about two years before I officially got diagnosed. And that was in the spring of 2011, so now it's been about 2.5 years since I've been diagnosed and working on treatment methods for my narcolepsy.

[thenarcolept]

Why I Believe the MSLT Could Be Improved

I recently underwent a duo of sleep studies to help determine whether or not I have certain sleep disorders. The overnight Polysomnogram (PSG) monitored me all throughout the night, whether awake or asleep, to determine what happened with my brain and body during the night. If successful (meaning that no issues like obstructive sleep apnea or periodic limb movement were found during the PSG), I was to stay the next day for a Multiple Sleep Latency Test (MSLT). I attended both of these.

For the MSLT, I kept all of the electrodes attached to my head, face, and shoulders/chest, to monitor brain waves, eye movement, and ekg only. But unlike the PSG, I was told to wake up and stay awake until they told me I could take a nap. In between naps, I was allowed to move about the little room as I pleased, and engage in any activities that I wanted. There were two rules: NO caffeine and NO napping until it was nap time.

The problem, however, is that I do not sleep on command. I sleep when my body gets sleepy and forces me to sleep. This led to several problems during the MSLT:

I had just spent the past 2 hours forcing myself to stay awake, so when nap time came, it was not so easy to switch modes and allow myself to go to sleep quickly.

I was worried and nervous about falling asleep quickly so that the lab could record good/ample data from my naps, so I was unable to fall asleep quickly.

I don't get to choose when I am sleepy or when I want to fall asleep, which led to me napping accidentally in between my scheduled nap times (and thus, off the record).

I asked the technician why there are two-hour breaks in between each nap, and he told me that it was because some people only get sleepy at certain times of the day, so they schedule the naps at prime times or something like that. I was somewhat dissatisfied with that answer, but didn't push it any further.

The thing that bothers me is that if you are studying a person with excessive daytime sleepiness (EDS), they are already having issues with controlling their sleep, so I don't understand how forcing them into a sleep schedule will yield the best data. Now, I am not a sleep doctor or a neurologist or a neuroscientist or anything, so my observations are plainly that: observation. But if one is attempting to learn about the way a person's body operates, wouldn't it be best to study that person in their typical "environment"?

While browsing the forums on Narcolepsy Network, I came across thread after thread of people who had similar problems during their MSLTs. I've read countless stories of people who had to have more than one MSLT in order to "catch" them slipping into REM during a nap, and thus confirming their Narcolepsy diagnosis.

So, why oh why, can the sleep labs not adjust their procedure for the MSLT? Is it not possible to monitor a person all day (well, for 8-10 hours or so) and catch the data when they slip into a nap? Isn't this pretty much what happens all night during the PSG? If they want you to take 20-minute naps, they can wake you up after you've been sleeping for 20 minutes instead of waiting for you to wake up on your own (if left unattended, I can nap for hours). Perhaps they don't want to use the equipment to monitor people all day long, but I would argue that if this were the procedure, many people would get their 4-5 naps in MUCH sooner, then saving them time overall.

Now, from what I have read, people with Narcolepsy may not even slip into REM every day, so there is still a chance that the results will come back "normal", but I still think this is a better option.

I also wonder about the nature of forced naps versus natural naps. I understand that for a classic, textbook case of narcolepsy, the person will slip into REM very soon after falling asleep. But from all the research I have done, each person with narcolepsy is very different, and there are varying degrees of how much each person is affected. Is it not possible that I slip into REM quickly during a natural nap, because that is my body telling me to go to sleep like it normally would, but actually FORCING myself to go to sleep is a difference process which may not yield REM as quickly?

Another thing, from what several doctors have told me, is that it is normal for people to get a bit sleepy around 10:00 am and 2:00 pm, and so they screen for this to weed out people who have deeper sleep issues from the people who just get a bit sleepy during "normal" down times. So perhaps watching *when* a person normally naps could be enlightening.

It seems to me that it would be more logical to monitor a person during their normal, natural naps than forcing them to adhere to scheduled naps and expecting to collect the best data.

[thenarcolept]

As a Slave to Somnolence

We walk, not in unision. Not because we don't want to, but because your legs pull you forward and mine drag me down. I watch as you bounce with enthusiasm, walking with purpose, emanating energy like you're the god damn sun. I will my legs forward, let out a small squeak in pleading for you to wait up. I breathe deeply and push forward in a poorly executed hustle. -------- We sit, cozy in our tiny chair. The cat at our feet, her eyes on the television with an eager intensity that neither of us seems able to match. We watch in amusement as she leans forward, letting out excited little mews when something completely irrelevant to cats happens on-screen. A woman makes a statement, nodding her head in finality. A man smooths his hair back. Mister Pooch (my dog in Dragon Age Origins) lets out a "woof!" and rolls over on his back.  I giggle, because the cat is absurdly cute and confusing. My limbs turn to jelly. Whatever I am holding falls into my lap as I lose all control, from shoulders down to fingertips, from hips down to tiptoes. I giggle and accept my fate, at the mercy of my body and its whimsy. I am limp and amused and waiting until I have enough strength to pick up the controller and continue playing, pick up my book and continue reading, pick up my food and continue eating, pick up my body and continue living... -------- We sleep, for three hours each night, in the same bed, we sleep. Three hours when our sleep patterns overlap. Three hours when our brain waves sing and swim and slumber so close to one another. Three hours in which I can be close to you, so close to you, while fully entrenched in my supposed repose. Three hours in which I can pretend that our bodies might somehow synchronize. I am frustrated as I fall asleep many hours before you do. I am frustrated as you wake up and you pace around the room and you whistle a cheery tune that clearly says "I-I'm awa-ake and yo-ou're no-ot!" I am frustrated as I snooze, only hours after getting out of bed. I am frustrated as I doze off every. fricking. time. we attempt to watch something for more than five minutes. I am frustrated because I know that it frustrates you too, and I am sorry. -------- I am weakened, like when laughing, as you make sure I am comfortable. As you take over the carrying of things. As you prepare my lunch and take a bite of it to remind me of you when I open it the next day. As you feed the cat. As you take care of me in ways I never expected. I am weakened as I look up into your eyes. My forehead wrinkles from the amount of effort I have to exert just to open my eyes enough to look at you. I channel the last dregs of energy down my arm, into my hand, so I can pet your soft, stubbly cheek. So I can look in your eyes and touch your face and plead with all my heart that you understand how much all of this means to me. Pleading that you have patience as my fingers slide down your neck, as my eyelids fall, as I am lost to this curse once again. As I succumb, a slave to somnolence.

[thenarcolept]

On Cataplexy

A common symptom of narcolepsy is cataplexy. Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions. There are varying degrees of cataplexy, and over the years, it appears that mine has been getting worse.

It used to be that whenever I laughed, my knees would buckle. If that something was especially funny, my knees would buckle enough that I would droop to the floor. I honestly thought that this was natural and that it happened to everyone. Lately it is more extreme. I lose muscle tone in all of my extremities. I lose control of my arms and legs, my head flops forward or backward (depending on my position at the time), and I kind of collapse.

Other emotions that seem to trigger cataplexy for me are: sadness, bewilderment, and deep love.

I've experienced cataplexy from sadness to the point that I am left immobile for upwards of 30 minutes. :(

I've experienced cataplexy from bewilderment to the point that I flat out fell down on the floor, face forward. This was an immediate response and I recovered after a couple of seconds.

I've experienced cataplexy from love on a very regular basis: namely, every time I have relations with my boyfriend. There is a certain point where I just collapse, kind of like with the laughing experience. It happens so often and seems to linger (and my boyfriend can pretty much trigger it whenever he wants!).

My new sleep doctor tells me that they have a medication to help with cataplexy now! I find this intriguing, but I don't know if I will take it. Although I do collapse sometimes, so far my cataplexy hasn't been very dangerous, and it doesn't happen so often that it is interfering with my daily life in any kind of negative way. The less medication I have to take, the better.

[thenarcolept]

On Hallucinations

It's funny how often one can experience things on a regular basis, and not fully realize what is happening. It only occurred to me last night that I have been experiencing a rather high frequency of hypnagogic hallucinations lately.

Often, just before I fall asleep, I will hear my boyfriend having a conversation with someone. So I wake up and go ask him who he was talking to, but he always says that he wasn't talking at all.

I have also had hallucinations involving:

him doing things when he wasn't (and was clearly sound asleep)

my front door being opened

people moving things around downstairs, when we are both upstairs and in bed

generally, just people doing things they shouldn't, in my home while I'm asleep

my dreams "coming to life" and upon waking I am startled to realize that I'm not actually holding/doing whatever it was

Usually, thank goodness, they are not scary, and for some reason I feel either fully equipped to investigate, or too sleepy to bother investigating.

[thenarcolept]

On Disordered Sleeping

Lately my narcolepsy has been creeping up on me rather thoroughly, so trying to deal with it has been quite the learning process. I thought that blogging about it might help me to sort through my experiences and what I've learned. This will probably be the first of many.

I won't do a complete recap, but suffice it to say that I have been struggling with disordered sleeping for years, most especially within the past 3 years. I do not have an official diagnosis (yet) but I have doctors with suspicion, and personal certainty based on the multitude of research I have done thus far. I have an appointment next week with a new sleep doctor who specializes in narcolepsy, so hopefully I can get some firmer answers soon.

Last night I had one of many sleep attacks -- in public. I think I am lucky in that most of my sleep attacks seem to happen at home, or at work in the privacy of my office. I haven't had a public sleep attack in a while.

My boyfriend and I were at one of the local card shops awaiting the start of a Magic: the Gathering (standard, if you're curious) tournament. While waiting, the sleep attack hit. It's funny, because now I can recognize when one is coming, and so can my boyfriend.

I get hit with this overwhelming need to fall asleep. My body goes kind of limp and floppy and I can barely move. I just look at him with these half-closed eyes and mumble "so sleepy" and just kind of slump down into some sort of sleeping position. My boyfriend, sweetheart that he is, just helps me get comfortable and tells me to rest. I fell asleep on his backpack.

The interesting thing, though, is that while I couldn't resist the urge to fall asleep, I was having mild difficulty because of my position (sitting up in a chair). My body was so limp and "cataplexied" as I describe it (more on that later) that I just really needed a place to lie down. I found that the need to keep myself upright (so I didn't fall out of my chair and onto the floor and embarrass myself) was enough of a challenge that it kept me partially (I mean like 7%) awake. Frustrating.

I slept for about 10 minutes and then was able to recover enough that I could play when the first match started (and yes, I won my first match, thank you very much!).