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.

 

Advertisements

5 thoughts on “Diagnosis in Spain

  1. Hey, kid, hang in there. I’m praying for you.

    I FINALLY framed your paintings, but I didn’t get a chance to take a photo.

    The curator of the Golden Gallery has a tough job, you know. I want to respect your artistic vision but the NEA grant hasn’t come through for the custom frame fitting yet, so one of them is sort of floating in a frame (which looks nice) and one of them is sticking out the side by about an inch (which looks not nice). Also the inch sticking out has your signature on it so I definitely can’t lop it off.

    My brother suggested folding it in. And crease the canvas!? Unthinkable…

    Like

  2. Sleep studies are rough– I’m sorry you had to do two of them. I can hardly imagine what this Christmas must’ve been like for you without meds. I glad that at least the doctor looked more carefully at the results of the first one to know that they weren’t normal and I’m praying the results for this second one are enough to get you the medication you need! Hang in there, girl! ❤

    Like

  3. Hi Elaine!

    I just a few days ago did a sleep study to check for sleep apnea (which I do not have) and more importantly narcolepsy. I’m pretty sure that I have some other symptoms of narcolepsy such as cataplexy but have not seen my doctor since my original appointment to update him. I fell asleep for two of the five naps but it was not within seven minutes. Your story is very helpful to me especially since I worry about being under diagnosed (I also have another chronic illness and it took around two years to get a diagnosis and to convince my family and friends I wasn’t a hypochondriac.) Everything you describe about your narcolepsy sounds similar to what I deal with I’m just nervous my MSLT will not be a strong indicator of my every day life and daily sleep attacks. It’s reassuring to know that you questioned your doctor, I worry I’ll have to do the same.

    Thanks for your honesty and for sharing, it’s helpful to find others!
    Keira

    Like

  4. Hi dear, are you still living in Spain? Where about’s are you? I recently moved here. I am in the Tarragona area in a small village called Ginestar. I am currently getting my meds from UK but won’t be able to do that forever. I was diagnosed with Narcolepsy and Cataplexy when I was about 12 in 1992. I don’t know how to navigate the healthcare system here or how to go about getting health insurance with my illness. Any advice would be really appreciated. Thanks, Bea

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s