I’ve always had problems with sleep, but it was only this year that I went to go have sleep studies done in order to test for what doctors believed to be narcolepsy.
I arrived at the hospital for my sleep studies at eight fifteen that evening. I immediately ran into Rob, the guy I talked to on my wild goose chase down i-95 that random Friday in March (I made an earlier post on this).
“I don’t know if you remember me,” he said, as I thought of the many twists of fate that have unfolded from those words.
“I remember you,” I said. “Hi, Rob.”
“How’s school going?” he asked.
“Not too well…” I replied.
“Well, we’ll see if we can help you with that.”
So right off the bat I was met with optimism and positivity. I can do this, I thought to myself. Just as long as I don’t freak out.
After signing in and filling out some paperwork, I got paired with Karen, who would be my overnight sleep tech. She was about my mom’s age, loved to read, and couldn’t help but be happy. She was super personal and sweet and helped me relax… And that was something I really needed to do. I had just come from a final, which I had over dosed on caffeine for in order to survive, I was nervous about the whole sleep study process, and it was well before the time when I would even think about going to bed.
But Karen’s positive attitude helped me adjust to my strange surroundings. She brought me pediatric devices to fit me better and told all about what she was doing, as we talked about sleep, my English major, the books she was reading, and how she loved her job more than anything in the world. It was nice.
I then made the executive decision that it was time to use the restroom (I had to call for Karen to detach me from what I had dubbed “wire central”). After that, I tried to go to sleep… the key word being tried. I’m sure I tossed and turned wide awake for a while, not only because I realized it at the time, but because Karen informed me in the morning that I took a while to get to sleep. Um, yes… I was nervous and uncomfortable with all of the weird equipment taped to my body and breathing felt odd with the nose thingys (sorry folks, I’m sure there’s a proper term for those).
Anyway, Karen also said, “you had some dreams… do you remember dreaming?” to which I replied, “Yes, I do.” I actually had an extremely vivid dream. At the time, I could recall it all, but it’s splotchy at best now. She also said that I had slept enough hours so that I could proceed with the daytime nap test, also known as the MSLT. Apparently, you have to sleep at least 6 hours for the nighttime PSG, or they won’t let you do the MSLT, because the results will be “invalid” (validity, like in science!). Letting me proceed with the MSLT officially indicated that I didn’t have either type of sleep apnea, RLS, periodic limb movement disorder, or REM behavior disorder. Okay, good.
So I filled out a post-sleep questionnaire, took my thyroid meds, ate a NutriGrain bar and met the new sleep tech, whose name I don’t remember. I was with her all day, so go me. Not. I guess that means she just wasn’t as pure awesome as Karen. Anyway, the new lady was kind and compassionate, but a little more of a stickler for the rules and a little less of a bleeding heart than Karen. I basically just watched Good Morning America from six to eight, because it was just too damn early to do anything else. I thought for sure I’d be able to conk out by my first nap, which was scheduled for eight.
When it finally did come time to sleep, the tech took off a lot the annoying wires form the night before but just left on enough to track my brainwaves, eye movements, and muscle tension. She then had me test out the electrodes over the intercom and turned out the lights and told me to go to sleep (all while she monitored my brainwaves from the other room).
Fun fact: sleep is all about the brainwaves. If you don’t start producing a certain kind of brainwave, you’re not asleep, even if you feel like you are. A detachment from consciousness is essential to be “asleep.” But, for some odd reason, I never really lost attachment from mine they way I usually do. Instead, I was imagining pictures and listening to songs in my mind and thinking thoughts that were mostly anxiety related to trying to fall asleep:
“Okay, you’re dozing. Fall asleep. NOW. It’s still early. What’s it been? Like five minutes? You can do this. Wait. Why aren’t you falling asleep? You usually fall right to sleep! How much time has passed? When will she wake you up? How will she wake you up? If you screw up one nap, you’re sleep latency will be fucked up and they won’t be able to say you’re more sleepy during the day than they average person. If they don’t know this, then they can’t help you, like Rob said. If they can’t help you, then you’re just going to keep on suffering …Oh no. If I keep on suffering and living life the way I feel now, I’ll never accomplish anything let alone do the things I want to do and the things I know I can do.”
Obviously, this kind of thinking kept me from sleeping. But on the off chance that stream of semi-conscious anxiety produced brain waves that resembled any form of sleep—I wanted to know. So I asked the tech, “did I actually sleep?” She just shrugged and said, “No, but it’s only your first nap.”
But hearing that made it worse. Now that I had gone through my fuck-up nap, I had no more “wiggle room,” as the saying goes. I HAD to sleep on the next four naps, or the results would be “inconclusive” or worse, “normal.” (I know it sounds horrible to want wonky results, but when you feel as sleepy as I do on a typical day, you want someone to know, because then maybe you can get help, if that makes any sense…)
During the second nap I remembered the consciousness thing about sleep and tried a little harder to just let me body do what it would naturally and forget about where I was and even who I was. It worked (a little). But then as soon I could feel myself fading away to dreamland, I would jolt awake by the pounding of my heart. Great… Panic attacks induced by sleepiness and trying to sleep. Oh, the irony. But the tech said I did “drift off” a few times. I now know that I fell asleep in eight minutes for this nap, but only for a few minutes before jolting awake. So I did technically “sleep” on nap number two, but not long enough for them to really analyze the kind of sleep I had.
In between nap two and three I tried to read my book, which made me feel desperately sleepy, but I couldn’t sleep between naps. Not only was it not allowed, but I didn’t want to because I thought it would screw with the tests being able to collect the proper data. So basically, after twenty minutes of pure panic while trying to sleep, I would be aroused by the tech for the next two hours, where I would feel physically ill due to the rapid transition from panicky hypnagogia to absurd sleepiness when I was supposed to stay awake. Ugh.
When the tech came in to give me breakfast, she asked if I was having a hard time staying awake between naps. I said, “yes, but looking at the TV and my cell phone helps more than trying to read.” But that was even hard. I was so tired I couldn’t even focus on the TV or my cell phone, sick on my stomach from the nasty hospital food, and still anxious from not being able to sleep on two out of the five naps. It was honestly the worst feeling ever. I don’t typically deal with any sort of abnormal anxiety and to experience it while also feeling super sleepy was a unique form of hell on Earth.
I didn’t sleep at all for the nap at noon, and the tech said that she, “wasn’t seeing much sleep,” for the one at two. I didn’t know what to do. I was so nervous and upset, because I was clearly sleepy, but I just couldn’t sleep for the test! At one point during one of these naps, I thought I was going to have a heart attack. And I even said to the tech, “I bet my heartbeat is way up, despite the fact I’m drifting off to sleep.”
Essentially every time this horrendous nap/wake cycle repeated, I tried to lull my thoughts into that increasingly incoherent chain of pictures and sounds that comes right before sleep, but the thoughts were too nervous and aware of what I trying to do, so it was a fail. I watched a lot of shit TV and lamented over the fact that my brain wouldn’t function well enough for me to read twitter (not even my novel, but twitter) and how I sill couldn’t sleep for the naps, despite my inability to function, and how if I were at college, I’d be asleep. Oh dear God I’d be asleep—in the library, at work, in class, at the gym, in my bed, in my friends’ rooms… Oh, and I continued to feel like shit. Lunch was better than breakfast, but I was still sleepy and sick and eventually the vomit-y feeling started to return. I say this to my friends as well as my hypothetical archenemies: don’t eat hospital salmon.
But by the time four o’clock rolled around, I could see the dark circles re-appearing from underneath my eyes from only getting around six hours of sleep the night before and being so fucking stressed yet dysfunctional the entire day. I did finally sleep. At the time, I didn’t know how long it took me to get there or what stage it was, but the tech said she “got some sleep this time,” and I woke up, smiling with relief. FINALLY. I now know it took me over ten minutes to fall asleep and it wasn’t very deep sleep.
But I had no idea of how things went at the time. I said goodbye to the tech, feeling clueless as to what was going to happen with me. I know a good sleep doctor doesn’t rely completely on those tests, but he certainly does consider them. And my tests were most definitely not an accurate depiction of my sleepiness for whatever reason (Oh hey, anxiety). All I could think to do was explain to the doctor, during my follow up, my pure nervousness about “performing” accurately on the test. I wanted the tests to serve as a clear indicator of my sleepiness, because I’m most definitely not “normal” when it comes to sleep. Almost anyone who knows me will tell you that… I haven’t been for a while. When I left the hospital, I got into my car feeling scared—as though my entire well being and future were riding on the outcome of this stressful sleep test.
After arriving back to campus, my mind felt heavy. I knew had to finish my finals, say goodbye to my friends, move back home, wait a week, and then make the return journey—across the state—to the doctor’s office in order to get my results and discuss them. Well, the thing about time is that it does eventually tick by, even if it feels like an eternity.
My results? “Inconclusive,” just as I suspected. I did explain to the doctor about how my previously non-existent anxiety had come back from the void to bitch at me for the entire process. And I actually think he heard me out, in the end. Although, it really did bother me when he said, “we’re not testing for the kind of sleepiness that can be cancelled out by anxiety.” I mean, if I were in my natural environment and he could somehow miraculously collect data all day about my napping habits without me knowing I was being tested or me having anxiety over the fact, I think the results would have looked quite different. Quite frightening, actually. I also spoke to a professor (a Ph.D. in psychology) about how anxiety affects sleep and he said that even with someone with a true sleep disorder, depending on the severity of the problem, could easily have anxiety interfere with his or her sleep. He even went on to say that the chemical reactions that go through your body when you’re nervous, scared, or anxious are actually quite similar to chugging a gallon of Redbull…why do you think anxiety exists? We primitive humans probably needed it to jolt us the fuck up from a dead sleep whenever predators came around… It’s powerful stuff.
There is also this enormously important fact that the test itself notes in the form of a disclaimer: regardless of results, a patient’s history and symptoms are the most important basis for evaluating excessive daytime sleepiness. In other words, at the end of the day, there is no true way to test for narcolepsy. Even the more invasive methods of testing often yield inaccurate results. The MSLT is as close as we come, but it is ridden with so many faults that it’s no wonder that around three quarters of people who have narcolepsy are undiagnosed, or that it sometimes takes decades to get a correct diagnosis. I mean, think about that. That’s a lot of needless suffering. Even with illnesses like depression, where there are NO tests used for diagnoses, more people get the treatment they need, because doctors take people’s word and how they feel, as opposed to numbers on a test. The community of endocrinology is the worst at this, because they seem to think someone’s blood levels are the sole indicator of thyroid function (they’re not). But that’s another story for another time.
Let’s keep focused on sleep:
Ultimately, the doctor thinks I do have narcolepsy and diagnosed it as such, so that I could get appropriate treatment for my sleepiness. I am grateful for his insight to a problem that has been going on in my body for four years now and that he was so willing to listen to what I had to say about how I feel. Will practicing better sleep habits and taking meds help me? Probably some, but it’s not going to be a cure all…that much I know. I am just happy to see progress though. I’m not very far along in treatment, but it already does seem to be making a difference.
I still don’t think anyone around me understands what I’m dealing with, but I’m starting to be okay with that. I’ll probably have another MSLT at some point, if my symptoms get worse, or if I need a med check and whatnot…and if that one actually demonstrates my sleepiness, then I guess I’ll be able to get people to believe me when I say that I suffer from this debilitating sleep disorder. But for now, I’m trying not to care as much about what people, even my loved ones, think about me in regard to this. I know I’m not lazy, crazy, or weak. I now know my problem is sleep.
My days of thinking of myself as weirdo are gone, and all because someone pointed out that, “hey, this actually sounds like a sleep disorder.” As many doctors as I’ve seen for various misidentifications of my health problems, I will be forever grateful to the one who realized this.
So here I am now, hoping to finally start living life I want to live. If there’s one thing I want people to take away from my frustration and pain throughout all of this, (and trust me, I know there’s going to be more of those things…the word chronic isn’t put in front of illness just for fun) it’s this: I want people to understand that education on sleep, its importance, and sleep disorders is critically low. And it’s at an all time low when it comes to narcolepsy.
Most people just assume that having narcolepsy means falling asleep in your food at random and falling over all the time in the middle of activities. It only takes a little research to find out that this is just not true. The part of narcolepsy that is so heavily stereotyped is actually only one aspect of the disorder, and it’s called cataplexy. The ironic thing is that most people don’t even fall asleep during a cataplexy attack. They may collapse and be unable to move for a bit, but their consciousness is often retained. However, it’s also possible for someone to have narcolepsy and NOT have cataplexy. This person might have other identifying symptoms like hallucinations or sleep paralysis, but even those aren’t necessary to have narcolepsy either. Excessive daytime sleepiness is truly the only symptom that all people with narcolepsy share.
So really, a disorder that is made out by the media to be people falling into soup is actually just a bunch of normal looking people stumbling through their daily lives mindlessly tired with no relief from any amount of sleep at night.
I believe that to be the best description of the disorder that I can think of for people who may not understand.
So please don’t let people tell you that you’re fine when you’re not. Don’t let those around you fool into thinking “everybody’s always tired.” Don’t do it. For starters, this just isn’t true. You should wake up after a decent amount of sleep feeling refreshed and typically be able to do most of the things you want to during the day. And even if everyone else in the world looked, acted, and vocalized that they felt horrible all the time, it still wouldn’t matter when it comes to how YOU feel. You can’t feel someone else’s pain, and they can’t feel yours. That’s why it’s important to listen to your body and go to the doctor if you feel anything less than functional for an extended amount of time. Since I was seventeen, I’ve always felt tired no matter how much I slept. I can’t believe I didn’t think about a sleep disorder until just this year (I’m twenty-one). I feel like society makes it out like it’s okay to be dysfunctional. It’s almost as though in order to be a high school or college student you have to feel tired all the time, have no attention span, use alcohol and drugs to feel better, and have trouble with relationships. Wrong!
Getting enough sleep, feeling rested, eating right, doing well in school, and having fun with friends is NOT a mystical state of being that can only be achieved by an elite, lucky cluster of people. Um, no! That’s called being healthy and happy and I just want to scream out to everyone not to settle for anything less.
No comments:
Post a Comment