I think I HAVE NARCOLEPSY! Part Three
AlliNeedsANap
January 23, 2020
11:51am
If you’ve been following my “I Think I Have Narcolepsy” journey so far you know from Part One that I’ve been struggling with Excessive Daytime Sleepiness for fifteen or more years. EDS is a symptom of a larger issue, though the sleepiness itself can be a problem, much like how a fever is a symptom of an underlying sickness, but if the fever is too high you can suffer consequences. My underlying condition is (dear God, please be) narcolepsy — I think. Why am I begging God for narcolepsy? Because I’ve been misdiagnosed with depression, anxiety, thyroid issues, and other things for years. I’m ready go get this diagnosis and see some major changes in my life.
My overnight sleep study and Multiple Sleep Latency Test (detailed in Part Two) were held at a hospital sleep center on January 16–17, 2020. I slept all night, I napped most of the day, and then I was handed a wet wipe to get the sticky residue off my body and sent home.
With no answers.
They can’t tell you anything at the sleep study. They aren’t allowed to, sadly. I knew this going in, so I did my homework. I went in knowing what data my body needed to produce to “pass” the test. The MSLT is five naps scheduled two hours apart.
A sleep technologist will gently place sensors on your head, face and chin. These sensors are connected to a computer. Each is long enough so you can move around and turn over in bed. The sensors show when you are asleep and awake, and transmit data used to determine when you are in REM sleep. Once you are connected, the technologist will test the sensors by asking you to move your eyes, clench your teeth and turn your head. A low-light video camera will allow the technologist to observe your MSLT from a nearby room.
The nap trial begins when the lights are turned off. You will lie quietly in bed and try to go to sleep. The MSLT will measure how long it takes you to fall asleep. It will also measure how long it takes for you to reach REM sleep.
The technologist will awaken you after you have slept for 15 minutes. If you are unable to fall asleep, the nap trial will end after 20 minutes. At this time you will have an approximately two-hour break. You will need to stay awake, and you are free to keep busy in whichever way you choose.
This process will repeat four more times. After your [third] (noon) trial, you will have a light lunch. After your final nap trial, you will test the sensors again and they will be removed. You are free to leave when the final trial is complete. (one)
Don’t stress! No big deal! Just fall asleep. No pressure.
But I was, in fact, worried I wouldn’t be able to catch any zzz’s during those naps. Fortunately, I believe I did. Each nap lasted an average of 35 minutes. I was also released after my fourth nap instead of being asked to take a fifth nap. I am feeling good about the results. My follow up is scheduled for Wednesday, January 29. My update shall follow…………………. Until then:
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Today is January 30th, 2020. It’s a Thursday. I really wish it was a Friday, because I need the weekend. I had my follow up with the sleep specialist yesterday after work. I was so anxious all day. Friends and family texted me all day asking, “do you have your results yet?!” or “let me know what you find out! excited for you!” People are so kind to care that much. I’m thankful for all these people.
I won’t waste your time. I do not have sleep apnea, narcolepsy, or idiopathic hypersomnia. It’s the most disappointing personal news I’ve had in years. I told a friend today that the news was so disappointing that it felt like grief. I did cry; it was like mourning the loss of something very dear. I wept. That’s the best thing to call it. I know that sounds ridiculous. I won’t apologize for that, though. It meant that much to me to have a clear diagnosis regarding my excessive daytime sleepiness. I simply do not have an answer, nor do I have the gumption to continue searching for quite awhile.
The last time I pursued a name for what ailed me was in 2016 and early 2017. I worked hard to get referrals to doctors who might be able to take my symptoms and make sense of them. Every time I left a doctor’s office I had no answer. The feeling was always bigger than, “Well shootskies. No diagnosis for me.” It felt like a piece of my credibility was going down the drain. The more “no’s” I got, the more defeated I felt and the more vulnerable I felt. Why would anybody to continue to believe me when all of the tests keep coming back the same way? On paper, I’m healthy and well.
That time in ‘16-’17 was so hard for me. I don’t talk about it, ever. More than just the physical symptoms I was having, it felt soul crushing to think that doctor’s, friends, and family might believe— with every un-diagnosis — that I might be a huge wuss, or worse, that I might be making it up. I don’t know what else I can (should) say to people regarding my fatigue. Is there really anything I can say at this point? I’m not asking for sympathy — I never have. I really just wanted understanding and awareness. I definitely want them to know I’m not a liar, and I’m not exaggerating my symptoms.
I’m left with a lot of questions and emotional baggage from this experience. It was scary as fuck going up to my husband and saying, “Hey, I think I have narcolepsy.” Getting all that nerve worked up again after what I went through on a wild goose chase back in 2016? I thought I’d never look for answers again. I’ve never asked my husband if he thinks I’m a hypochondriac, but I know some people think I am. There are only about three people in my life who can serve as first hand witnesses to how much I sleep. In that regard, I know my husband doesn’t think I’m a fake. He witnesses it every damn day.
I can’t decide why I want a diagnosis, other that I want to prove that I’m not a liar. I’m having deep, philosophical, existential crisis-type thoughts. What is a diagnosis? It’s like a degree; it’s a piece of paper that tells you something you already know about yourself. It certifies you. So did I just want a big stamp on my head that said “clinically tired”? Does a diagnosis of idiopathic hypersomnia make me any better off than if I continue to live my life without a diagnosis? Here are the facts:
I still get to take the same meds. I still have access to the same qualified sleep specialist. What does the diagnosis really do? I’m really asking here. Readers: why do I want a diagnosis so bad?
I asked the doctor what we do now. She said, “We keep treating your EDS. We’ll up your dose to 200mg, and we clean up your night-time routine so that your sleep and wake schedule is consistent. And I’d like to see you again in 6 weeks.” Okay then. I stood up from my chair and felt so ridiculously numb. I felt embarrassed, sad, empty, foolish, vulnerable, and….. tired.
For those wondering, my results were not indicative of any sleep disorder. I had a practically perfect night’s sleep, indicating no sleep apnea. I wasn’t surprised about that; I knew from the get-go I don’t have sleep apnea. Of the eight hours I laid in that bed, I guess I got 7.5 hours of sleep. Pretty Ace for anyone, I’d say. I had no significant night-time disruptions like sleep walking or limb movements. She said I moved a little, but nothing out of the ordinary. I was also not surprised by that.
I don’t struggle to sleep. I sleep too much.
During the MSLT, the day-time portion of the test, I told you I took four naps out of five. My fear was that I wouldn’t produce the right data to get a diagnosis, and my fear was the reality. I did fall asleep during each nap — in about 12 minutes. I never went into REM during the naps which meant no narcolepsy, and they don’t diagnose IH unless you fall asleep in less than 8 minutes.
The parts of my life I wish the doctors and technicians could see are that I can sleep from 8:30pm to 6:30am with no problem. I might wake up once, but seriously, on days where I sleep long nights, I get more than 9.5 hours. Another thing I wish they could see is that even though I fell asleep in 12 minutes instead of 8 every time, that my body and brain were sooo foggy and ready for each nap. I wish they could see how I feel. The last thing that they did not get to witness was that at the end of my fourth nap, when they sent me home, I got home and took a shower and promptly took a proper 2 hour nap before my husband got home from work.
Can you sleep for 9.5 hours at night, fall asleep four times during the day, take a 2 hour afternoon nap, and still want to go to bed at 8:30pm?
My guess is probably not. This is how I know I have excessive daytime sleepiness. It’s not caused by narcolepsy, idiopathic hypersomnia, sleep apnea, restless leg syndrome, insomnia, hypothyroidism, Lyme disease, cancer, vitamin B deficiency, iron deficiency, or any kind of autoimmune disease that we can tell. But God damn it. Please just believe me when I tell you that I suffer from excessive daytime sleepiness. We may never know what causes it. It comes in waves. Some months I’m doing okay. Other months it is hard for me to keep my shit together.
In Part One I said something that makes me feel really sad now.
I am about 90% certain I have narcolepsy, 9% sure it’s an even weirder condition called idiopathic hypersomnia, and I’ve left that 1% out there for chance — in case I really am a hypochondriac.
Time will tell. Stay tuned.
I’m too stubborn to admit I’m a hypochondriac. I can’t do it. I really didn’t think that when I wrote that last month that I’d be eating my words now. That part sucks, too. It doesn’t feel good to get bested by your own smart-ass humor. None of this feels good.
I am writing all of this because I still believe that my experience is worth being shared. It wasn’t all a bust. I learned that I do not have narcolepsy or IH. I also learned what to actually call my sleepiness instead of chronic fatigue. It’s called EDS. I have excessive daytime sleepiness. It’s a real thing — we just don’t know why I have it. I’m going to have to convince myself that it’s okay to not know. Maybe just having medication to treat the sleepiness and brain fog is enough. I should be happy with that, right?
I’m over here trying to be content with my non-diagnosis. The fact is that nothing in my life has changed. I’m not less of a person without a diagnosis. I may not have a label, but I actually still feel very much a part of the N and IH community. I share your burden, sleepy heads! Over the past few months it’s felt good to be open about my issues. I now have this budding compassion for people who suffer from something that most of the world does not understand. This journey took me to a place where I could advocate for and sympathize with folks with invisible illnesses. That’s a win in my book. Diagnosed or not, I’m still a nap queen, and I’m not going to stop learning about neurological sleep disorders. It’s all a journey, I suppose. Feel free to follow along.
AlliNeedsANap
January 30, 2020
4:52pm
My sources
ONE: http://sleepeducation.org/disease-detection/multiple-sleep-latency-test/testing-process-results
