The sleep study

I found this image online, these aren't my results.

It’s over. That is a good way to start. I hate the hospital.

I checked into the hospital on Friday night. The room was bland, poorly decorated and had a water stain on the ceiling. Pretty much like a $5,500* a night Motel 6 room. There was also a microphone on the headboard and an infrared video camera. Did I mention that I hate hospitals?

*I looked online and it appears that the nighttime sleep study (polysomnography - PSG) costs around $3,500 and the daytime Narcolepsy test (multiple sleep latency test - MSLT) costs about $2,000. Good thing I have insurance.

When I checked in, they asked me a bunch of questions about how I sleep. In my initial appointment, I had to fill out a questionnaire.** Then a technician came in and glued/taped tons of electrodes to me. I think there were about 23 or so of them. They were glued into my hair and taped to my face, chest, legs, and left hand. Fun stuff. I got to order my breakfast for the morning. I ordered a cheddar cheese omelet, an English muffin, OJ and bubbly water.

**With a little research, I found out that the questionnaire determines where I fall on the “Epworth Sleepiness Scale”. I scored a 14 or “seek the advice of a sleep specialist without delay”. You can take the test here.

DK and I watched TV and read books. DK was allowed to stay with me until 10:00 pm. That’s when they turned the lights out.

The technician plugged me into a machine on the night stand and then left the room. A few seconds later she came on the intercom. She asked me to lie on my back, as still as I could and follow her instructions so she could get sample readings. For example:

• Stare strait up at the ceiling.
• Close your eyes.
• Breathe through your nose.
• Breathe through your mouth.
• Open your eyes and without moving your head look up towards your forehead, down to your toes, to your forehead, to your toes, to your forehead, to your toes. To your right ear, to your left ear, right ear, left ear, right ear, left ear.
• Wiggle your toes on your left foot.
• Point your toes on your left foot towards your forehead.
• Wiggle your toes on your right foot.
• Point your toes on your right foot towards your forehead.
• Take a deep breath and hold it for 10 seconds.
• Smile as wide as you can.
• Grind your teeth.
• Clear your throat.
• Blink 5 times.

After that she said I could get into any comfortable position and go to sleep. With all that shit glued to me, comfortable was really not possible.

I woke up a lot in the night as always. I had to get up to go to the bathroom once. So I had to press the call button and the tech came in and unplugged the main connection to the machines so I could get out of bed. Most of the time when I woke up, all I could think was “there is a morgue here, this place must be totally fucking haunted”.

At 7:00 am, the tech came on the intercom to wake me up. She came into the room and took the wires off my legs, hand, some off my chest, and the oxygen sensor that was on my face/nose. That was a relief. I still had about 12 wires on my head and face and 2 on my chest, but man it was great to get some of them removed.

My breakfast arrived and it was actually very good. The omelet was fresh, hot and cooked perfectly. I expected some dry, funny colored, egg-like catastrophe, but I was pleasantly surprised.

I was allowed to take a smoke break. I put my hood over my glue crusted, wire covered head and walked to the elevator. The tech said “Oh hey – just a warning, don’t say anything about bombs or explosives.” She was really funny and very nice.

Even with my hood, you could see lots of the wires and the electrodes taped to my face. It’s really funny how people treat you when you look different. I have to say, I had never really experienced this before. Adults look at you, their eyes widen a little and then they immediately look away. They wait for you to get on the elevator first and then stare directly at their shoes. It’s almost like they will do anything to avoid looking at you or talking to you. Kids on the other hand are much more honest and have no problem expressing (non-verbally in my experience) that you look strange. Parents are mortified by this. On both elevator rides there were adults with a kid. The kid will just keep staring at you, eyebrows crinkled. One little boy was checking out my wires and with his eyes still locked on me said “Hey mom…” she cut him off with a squeeze to the shoulder and he knew not to say any more. This made me realize that next time I see someone who is different, like missing a leg for example, I will still hold the elevator door, but after that I am not going to act any differently. It’s a very isolating feeling and I only had to live with it for a few minutes.

Back in my room, I watched more TV and finished the book I was reading (Stolen Innocence: My Story of Growing Up in a Polygamous Sect, Becoming a Teenage Bride, and Breaking Free of Warren Jeffs by Elissa Wall and Lisa Pulitzer. Elissa Wall is the woman whose testimony put Jeffs away for 10 to life. It’s an amazing story and I recommend reading it.)

At 8:30, a new tech came in and plugged me into the machines again. He asked me to take a nap. He turned the lights out, left the room and came over the intercom to do the same calibration tests as the night before. After 30 minutes, he came back on the intercom to run the calibration tests again, and then he came in and unplugged me. I had 3 more nap tests with another tech, each with same calibration tests. Overall, this is what I think happened:

• Nap 1 - 8:30 am: 99% sure I didn’t sleep.
• Nap 2 - 10:30 am: I definitely slept.
• Nap 3 - 12:30 pm: I am pretty sure I fell asleep.
  (I think I had a dream about Bladio and Sally!)
• Nap 4 – 2:30 pm: I am 99% sure I slept.

I had lunch at 1:00 pm. I ordered a veggie and dip plate, veggie chili, and a grilled cheese, cheddar on sourdough and bubbly water. My lunch was delivered to the tech room during my 12:30 – 1:00 nap, so it wasn’t really hot, but I have to say, it was still fairly good. I figured I should order as much food as I wanted because my insurance was paying for it. The great thing about the menu at the hospital is that they have EVERYTHING. I think that may be because sometimes when you are sick, only one thing sounds good to you and if you can’t get that, you don’t want to eat at all. I also got to take another smoke break after lunch.

They said I might have to take another nap at 4:30, so I was relieved when the tech came in after waking me up at 3:00 pm and said that they had enough data and I was free to go. Yay!

It’s really odd how I am not sure if I slept or not. They asked me after each nap if I had slept and if so, did I dream? They know the answers to these questions, but I guess part of the test is seeing if I know. I didn’t look up online how they test for Narcolepsy. I felt like if I knew what they were looking for before the test, I might subconsciously skew the results to my desired outcome.

I just looked up how they test for Narcolepsy. I found this on Wikipedia: “The Multiple Sleep Latency Test (MSLT) is a sleep disorder diagnostic tool. It is used to measure the time it takes from the start of a daytime nap period to the first signs of sleep, called sleep latency. The test is based on the idea that the sleepier people are, the faster they will fall asleep.”

This is the grading scale (in minutes):

• 0-5: Severe
• 5-10: Troublesome
• 10-15: Manageable
• 15-20: Excellent

I think that I fall into one of the last two categories, although it’s really hard to tell because I don’t have a very good concept of time and of course, there was no clock in the room. I also don’t know what “the first signs of sleep” are, so I could be totally off on where I fall on that scale.

I get my results this Friday at my follow up appointment with the sleep specialist. I will let you know what they say.