Narcoleptic Nightmares

I don’t know if I’ve ever written about this before, but narcoleptics have nightmares. And since they spend so much time in REM (dream) sleep, they tend to have a lot more nightmares than the average person. At least, I do.

It’s not normal bad dreams, either, because they don’t end when I wake up — it’s a bizarre combination of actual dreaming, sleep paralysis, and hallucinations, I think. It’s horrible. The other day, I dreamed that there was a dead fox on my desk, and I was trapped in my room with it, and I had to just lay there, terrified and slipping in and out of dreaming, while it turned green and rotted and its juices leaked onto the floor. I can still smell it.

I’ve never in my life felt as scared as I do during a nightmare, the fear is almost incomprehensible. It’s like, you know that you’re going to die and the feeling of being trapped is so strong and raw, it turns you into an animal.

 

I know that’s like, really melodramatic, but you have to understand how horrible these dreams are. They’re more real than dreams but less real than reality, you get stuck somewhere in between. I have them every night, often many times, and I don’t know why. Sometimes I can wake myself up by scratching at my face, but this is not an ideal solution, because it leaves scabs on my poor face, and they leave red marks long after they’ve healed.

So, narcolepsy isn’t just sleeping a lot. I wish that were the case, because that sounds peaceful. The truth is, I hate sleeping, I hate the time it steals from me during the day and I dread having to go to bed at night, because my sleep is so light that I can feel the hours passing slowly, and I slide in and out of nightmares. Sleep doesn’t give me any rest.

A photographer named Nicholas Bruno suffers from sleep paralysis as well, and he’s made this awesome portfolio recreating his hallucinations. I really love his work, because his hallucinations are strikingly similar to mine, there’s some intangible quality in his art that makes me feel like I’m looking at my own nightmares.

So, if you feel like looking at creepy stuff, you should check his photography out here.

 

 

Image

Illness is the night-side of life

Captura de pantalla 2016-02-22 a la(s) 9.08.18 PM.png

Picture is a repost from Julie Flygare.

La enfermedad es el lado nocturno de la vida, una ciudadanía mas onerosa. Cada persona al nacer posee una ciudadanía dual, en el reino de los sanos y en el reino de los enfermos. Aunque todos preferiríamos sólo utilizar el pasaporte bueno, tarde o temprano cada uno se ve obligado, al menos por un tiempo, a identificarse como ciudadano de aquel otro lugar.

Taking my bad passport and heading home, to the other place.

Going Home

So, long story short, I had my follow-up for my sleep study, and the sleep clinic isn’t going to give me any medicine, for reasons that are dubious at best. So I’m a little out of options now.

I haven’t left my apartment in about a month except to go to school, the grocery store, and my private classes. Even when I’m at school, I feel like a zombie, or like a shell of a human being. I don’t think I have a personality anymore, all my energy goes into not falling asleep. I can’t string sentences together, not in English or Spanish. My room is a wreck because I can’t keep up with all the things required to make my space neat. All I eat is bread and frozen pizzas because trying to figure out meals and groceries and everything related with food planning is overwhelming and I just can’t rely on food that can’t be eaten immediately. I’m too tired to prepare even simple things.

I don’t want to be like this, but I can’t change my situation through sheer willpower — even though I’ve been trying. So I’m going home.

I had planned to go back to the United States at the end of the semester, but this week I realized that it really can’t wait. So I’m going home next Friday, I’ve got a week to pack up and say goodbye to people.

The good news is that I’ll be able to get Xyrem in the US — probably — and that could turn everything around. If my insurance approves Xyrem, I could even get a supply to take to Spain in the fall so that I can come back and teach another year. So I will hopefully be able to come back.

But I really don’t want to leave. I love Spain, and I keep hoping that things will get better, that I’ll have a day where I feel okay and I’ll be able to go to Madrid or travel a little or something. But I never have days like that, so I need to go home and get my health sorted. It really, really sucks.

Excursión to Madrid

Yesterday, I went with one of my classes to the National Museum of Archeology in Madrid.

On the bus ride there, I tried my best to stay awake and look at the ugly, flat scenery as we approached the city. As the roads narrowed and the traffic increased, Juanra, my best teacher friend, leaned over and told me we had about 15 minutes before arriving if I wanted to take a nap. He sees me every day and can tell, more than anyone, when I’m tired. I’m never sure what gives it away, because I always think that I’m being normal. My mom says you can see it in my eyes.

So I slept for a few minutes before we arrived at the museum. Juanra’s voice woke me up, and he apologized for waking me, but it didn’t matter because I felt slightly better.

At the museum, I was in charge of keeping the 12-year-olds from

1) touching the priceless artifacts

2) taking pictures of the genitals on the statues, and

3) running away.

I was only marginally successful at all of this.

I tried to pay attention as the teacher I was helping talked about the different exhibits, but even though the words entered my brain, they wouldn’t stay there. I listened to everything as best I could, but it was like I breathed the words in and out, like oxygen, and I couldn’t tell you a single thing he said.

We saw a cast of Lucy’s skeleton and statues from the ancient Greeks, and Egyptian sarcophaguses. In the Egypt exhibit, I turned around and suddenly all the wooden floors and all the hallways were slanting towards me, like I was at the bottom of a pit. A group of teenagers were coming towards me, walking down the steeply slanted hallway like it was a ramp, but they were huge, way bigger than any humans should be, and I stared at them because they were a strangely scary.

This isn’t real, I told myself. This is a dream. Museum hallways don’t have slanted floors. But I could still see the floors and they were very slanted. Think of all the museums you’ve been to. Weren’t they all completely flat? Museums don’t make uneven floors. This isn’t real.

My class was leaving the exhibit, walking up the floors, and I as I caught up with them I could feel under my shoes that the floor was flat, and in the next room things looked more normal.

museo_9143_622x.jpg

After the tour, I had a coffee in the museum cafeteria with Juanra and Esperanza, the young, beautiful, and extremely kind philosophy teacher, while the students ate outside in the rain. It’s the first year for all three of us at our school, so Juanra and Esperanza chatted about their classes and their impressions of the institute, while I listened. It’s very hard to talk these days, in both English and Spanish, so usually I prefer not to try.

Juanra said he was a disaster in the classroom, which isn’t true, and I know because I have class every day with him, and I wanted to say something but the thought of opening my mouth was overwhelming, so I kept quiet. I felt guilty, listening to Juanra speak freely to Esperanza in Spanish — we generally speak only in English, which is his second language, and it’s not as easy for him to express himself with precision.

I’d like to speak in Spanish, but my brain works so slowly. It’s hard to string together a sentence in English, let alone Spanish, and I’m sick of feeling humiliated when people hear my pauses and stuttering and assume that my level of Spanish is quite low. In reality, podría hablar fácilmente el español, si tan solo pudiese pensar con claridad y tener el cerebro que tenía antes.

So for the sake of my pride, I stick to English with Juanra, and miss out on hearing his unfettered thoughts.

At one point, Esperanza became very worried that my level of Spanish comprehension was quite low, since I wasn’t talking, and she had been speaking Spanish to me all day. I had to assure her that I understood everything — which is true — and that I prefer to just listen — which is not true, it’s not a preference, it’s a necessity. 

On the bus ride back to Alcorcón, I fell asleep, but this time I felt worse off when I woke up. When we arrived at school, I stumbled to the bathroom to take more medication, but it didn’t help, and when it was time for me to go home I found myself suddenly in the staff room, trying to leave, but I would blink and find that I had stopped moving after only a few steps, over and over, and I was very confused.

Diagnosis in Spain

My first sleep study here in Spain was miserable! I had never done a sleep study before, so I wasn’t sure what to expect. My sleep techs were super hot, when I opened the door to the sleep clinic I thought I had walked onto the set of Gray’s Anatomy or something — it was awesome.

As they were wiring me up, the hottest sleep tech, McDreamy, had to attach the electrodes to my legs, which was embarrassing, because I hadn’t shaved my legs in a really long time. Then, while putting the electrodes on my face, he had to wipe off the concealer covering the scabs and scar tissue around my mouth — because I scratch at my face in my sleep. As I was laying down in bed for the night, he took off my shoes, which were white canvas sneakers — and he saw that the insides were covered in blood from a time over the summer when I walked around Washington, DC until my feet were blistered. I hadn’t had a chance to wash the blood out — it’s just too much energy.

I had felt relatively put-together upon entering the sleep lab, but as McDreamy got me ready, I saw myself through his eyes — how my facade of being okay begins the crack the moment you look deeper. It was humiliating.

At some point during the overnight exam, I sat up and began to casually detach the wires from my body. After removing the heartbeat sensor from my finger, a sleep tech rushed in, re-attached my wires, and informed me that I had to remain laying down during the overnight test. The results of my sleep study showed that I was asleep during this exchange, but I remember it clearly, and I think it was real.

The next day I had to do the MSLT, which lasted from 7am until 5pm, and it was miserable. Every two hours, I was told to lay down and go to sleep for about 45 minutes. They were checking to see how fast I fell asleep — an indicator of sleep deprivation — and for REM sleep (dream sleep) during my naps — an indicator of narcolepsy. Two or more dream sleep periods during the MSLT is considered positive proof of narcolepsy.

I spent the day napping, reading, and hanging out with McDreamy. He let me come into the sleep tech room where they monitor patients and showed me the recordings of my brain waves from the naps. He told me I had slept during all 5 naps, and pointed out where I had fallen into REM sleep. For lunch, we ordered pizza.

I had my follow-up the next week, with a doctor who was tall and handsome, with salt-and-pepper hair, and extremely intimidating. He was the director of the sleep center, and spoke perfect English.

He informed me that my sleep study had shown nothing out of the ordinary at all — that my results were the results of a normal person. I had not fallen asleep during two of the naps, and for the other three I had fallen asleep at the 20-minute mark — the time it would take a healthy person to get to sleep. There was no REM sleep.

I told him that was impossible, I told him what McDreamy had said about my sleeping during all five naps, and about the REM period. I started to cry, because here I was sitting across the desk from this man, and I was so tired that I felt drunk, my eyes wouldn’t work right, and he was telling me that I was healthy, and I would never get medication to feel better if these were my results. After I left the sleep clinic, I sat on a bench outside the metro station and sobbed.

The doctor promised me that he would analyze the data from my sleep study himself, and I came back the next week for that appointment. As it turns out, after he looked at the data, I had indeed slept for all five naps, and had REM sleep in two of them. My overnight study showed strange sleep architecture, with too much light sleep and REM sleep, and hardly any deep sleep. I also had a sleep-onset REM period when falling asleep during the overnight exam.

The results looked like narcolepsy — the only problem was that it took me a long time to fall asleep during the naps. To test positive for narcolepsy, you need to have at least two sleep-onset REM periods during the naps and it needs to take you about 7 minutes to fall asleep.

The doctor thought this was because I hadn’t stopped taking my medicine before the sleep study. Since I am on a high dose of stimulants, he guessed that the stimulants were still in my system during the nap test, and that they affected my sleep latency. So he prescribed me another sleep study, but for this one he wanted me to be medicine-free for two weeks beforehand, to ensure that they were out of my system.

Without medicine, I can’t go to school and do my job, even though I only work twenty hours a week. So we scheduled the sleep study for the end of my Christmas break — while most people spent the two-week break traveling and celebrating the holidays,  I had to spend the entirety of my time in my apartment, sleeping and resting. I couldn’t pass the time by reading or watching TV because I was too tired to process the words on the pages, or the images on the screen. It all looked like nonsense to me.

It was scary to see just how sick I was without my medicine — there were days when I didn’t eat because I had no food in my apartment and was too tired to leave the house.

I just took my second, med-free sleep study. I haven’t gotten the results yet, but I’m hoping they turn out super narcoleptic. I really, really want to stay in Spain longer — and for the doctor to be comfortable prescribing me sodium oxybate, the tests need to show, without a doubt, narcolepsy.

 

Aside

I’m Back!

I’m sorry for not posting anything recently! I’ve been so tired, I’ve had to focus on just surviving day-to-day. But I’m back now!

I’m still trying to qualify for sodium oxybate here. I want to teach at my school for another year, but the meds I take now just aren’t good enough to justify staying in Spain for another whole year, it’s too difficult, I think. But sodium oxybate would be a game-changer — I truly think it would allow me to stay here longer, and to participate more in the Spanish life. I really love Spain, and there’s so much I haven’t seen or done yet, so I’m really hoping that I can get sodium oxybate. Otherwise, I think I’ll have to go back to the States, which would break my heart.