Finally, A Diagnosis and Imposter Syndrome, Too

Diagnosis: narcolepsy type one, or narcolepsy with cataplexy

(photo: New Years' Eve, 2010)

 Every now and then, I manage to make it over to the book club my friends get together and do once a month. Back, maybe last summer, they read the book called, "Becoming Mortal: Medicine and What Matters In the End" by Atul Gawande. (Highly, hugely recommend, best book I've read in a long time.)

While I was looking for it on the shelves at Barnes and Noble, I noticed another book called, "The Nocturnal Brain: Nightmares, Neuroscience, and the Secret World of Sleep." by Guy Leschziner. (also an amazing book. Do recommend, if you're interested in this kind of thing.)

I bought both books. I read Mortal first because book club was that night, then gave myself over to find out what the nocturnal brain was all about. He discusses two patients with narcolepsy. While both of them were more extreme cases than anything I've experienced, every single thing he said about them described as a symptom of their narcolepsy, I had to admit: I had experienced, as well.

Now, I've known people (one person) with narcolepsy, and so am somewhat more familiar with what it looks like than most people are. But also perhaps because of that, I constantly told myself, "no, you don't have that. Yours is different because of x, y, or z and it's nothing so serious as narcolepsy. You just need to work harder in life, stop being lazy, have some self control and do better tomorrow!" These were my pep talks to myself. Inspiring, I know.

And yet, there I was, that sunny summer afternoon, realizing that the nightmares that have plagued me all my life, the paralysis that accompanies them, and even this new thing called cataplexy that I had never previously heard of before but was suddenly realizing wait - that feels a little familiar - and wondering if maybe I should just casually ask my doctor, would he possibly think I might maybe could is there any way, what did he think about narcolepsy?

He asked my some questions about my sleep patterns and whatnot. Now, this man has been my doctor for over 12 years now, he has seen me to check up on my thyroid levels consistently every six months to a year, he has helped me through my IBS diagnosis, my chronic ear infections, whatever else comes up in 12 years as a patient, and so he listened to me when I talked about sleep. He listened, and referred me to a sleep specialist.

Another round of questions about my sleep patterns and behavior, wherein I began to question everything in my life. Is this true? Is this how I sleep? Am I exaggerating? Or am I underplaying it, because I'm worried about looking like I'm exaggerating? Sometimes, we get so lost in our own heads it can be hard to find the way back out.

He referred me to the sleep center for a polysomnograph (an overnight sleep study) and an MSLT (basically, a daytime nap sleep study.) I would be hooked up to wires all over my head, my face, my finger, my chest, my stomach, and my legs. I would not be allowed to take any naps the day before, nor eat or drink anything with caffeine, and should try to avoid any stress or stimulations that might cause me to not sleep well that night. 

I'd only heard bad things about sleep studies, and was extremely nervous. No one I knew had ever done a daytime sleep study, so I read as much as I could about those to try and be prepared for what the day would be like. 

After lights out at 9 pm the night before, and my sleep being studied and recorded all night long, I would be awakened at 5:30 am. They would serve me breakfast, and then my first nap would begin at about 7:30. I was subsequently to take five naps, spread apart by two hours, throughout the rest of the day. 

All I had to do for each nap was get in bed, perform a series of tests as instructed by my sleep technician over an intercom in my room from the room where they were monitoring me (open your eyes, blink rapidly five times, close your eyes, (with your eyes closed) look up, look down, look to the right, look to the left, swallow, clench your teeth), then relax, and fall asleep.

When it was time to wake me up, their voice would come over the intercom again. "Amy, it's time to wake up." They would repeat with me the list of instructions as before the nap, then come into my room and turn on the lights. Then it was another series of questions. 

"Do you think you fell asleep?"

"How long do you think the lights were off?"

"Do you feel more rested now than before this nap, or less, or about the same?"

"Did you have any dreams?"

The first, second, and last questions of those which, of course, they had the actual information as they were watching it all on their screens in real time: these questions were to gauge my perception of when I am asleep and when I am not. 

Dear friends, I was wrong so many times as I answered them. They could not tell me at the time that I was wrong, but since speaking to my sleep specialist who did give me the information on my data, I was wrong almost every time on every question - save the subjective one about whether or not I felt more rested.

I fell asleep during every single nap trial. My average wake to sleep time was 8 minutes, my fastest being three minutes to asleep. My actual time asleep ranged from five minutes to fifteen.

The strangest part was, I thought that I had never actually fallen asleep, because it felt like I had been aware and conscious the whole time, while simultaneously being confused because it also felt like I had dreams. This is because my mind was moving in and out of sleep so fast, and images and disorientation were making it hard to distinguish sleep from reality.

Diagnosis: Narcolepsy type 1, which is narcolepsy with cataplexy.

Basically, it means my body does not produce the chemicals that induce wakefulness during the day, and also does not adequately regulate the chemicals that induce sleepiness at night, to keep a person asleep and moving through the cycles of sleep. Which leads to: excessive daytime sleepiness, and nighttime insomnia. This disease comes coupled with other symptoms such as the nighttime sleep hallucinations, the sleep paralysis, and the cataplexy. I've heard it explained that someone with narcolepsy has such ineffective sleep that a 12 hour night's sleep for a regular person would only feel like 2 to 4 for someone with narcolepsy. It literally does not matter what time I go to bed or wake up, because even when I am "asleep", my brain is not resting. And then, during the day, my brain struggles, and regularly fails, to keep me awake.

Its been two weeks now since the diagnosis, and a week ago today I started the first med my doctor wants me to start taking, and will soon start the second. One to help me stay awake during the day, and one to try and help me sleep more effectively at night. I share all of this because a. narcolepsy is not very well understood, and I suppose I want people to know I'm not lazy! I'm sincerely tired. and b. one of the meds I am on has some side effects, and they encourage patients to tell friends, family, neighbors, coworkers that they will begin taking the medication, for a variety of reasons.

And so, I am telling you. I'm not trying to make a big scene, or cry for attention, but also would greatly appreciate if you have any knowledge or insight into narcolepsy that could help me as I begin this lifelong journey. There aren't many books exclusively devoted to the topic that I've been able to find. 

I've read a lot of articles online, watched youtube videos of doctors and neurologists discussing it, I've talked to the person I know who also has narcolepsy, and I'm interested in any other resources, if anyone knows of anything.

Every day, I wonder if maybe the dr was looking at someone else's results, or maybe he had gotten confused, maybe I don't have a neurological disorder, maybe this isn't real, maybe...

and then sometimes, I think, I'm not lazy.

Super massively attractive.

The hair really just got better and better as the day went on. I had to take two showers to wash out all the glue on my scalp. Hallie came with Devin to drop me off and say goodbye.

And then I came home, made dinner, took the girls to their church activity, and was asleep again that night by 8 pm. After sleeping eight hours the night before, and taking five naps that day.