I had the sleep study done Monday night. I dreaded it the whole day. It was pretty awful. Nothing gives me anxiety like “Hurry up and go to sleep”. I had the worst time relaxing.
I got there at 9pm. Well, like 9:08. But the technician was helping another patient at the time, and didn’t get to me until 9:45, so that 8 minutes didn’t matter. It was just me and one other person having the study done that night. I didn’t meet him or anything, but I’m assuming his name was Mr. Leaves-the-toilet-seat-up. The sleep study rooms shared a bathroom and I had to grab a tissue to put the seat down every time I went to the bathroom and it made me really irritated. I guess I haven’t quite mastered the whole “pee standing up” thing yet.
The technician running the study was really sweet, which was nice, because I’m shy about asking for help, but she made it easier. The room was a lot like a little hotel room, without windows. The bed was pretty comfortable. I brought my mom along, and she had to sleep in a recliner. I was hoping they would be more accommodating for family, since I’m probably not the only one that brings someone. The tech started by taking down my ponytail and putting waxy stuff in my hair so leads would stick to my head (I later figured out in the shower that the waxy stuff is water-soluble and washes out easily, so no worries there) and from there she taped leads to my face too. Two on the forehead, one on each temple, one behind each ear, one on the chin, two on the larynx, and probably more I don’t know about. I also had one on each ankle and a little device under my nose to record breathing sounds. All the leads were connected to a box on my chest that hung around my neck. It’s a good thing I’m not a stomach-sleeper. The box was connected to a machine that records all the information from the leads. I also wore a pulse-ox on my finger. When I had to pee, I had to ask, so I could be disconnected. There was an intercom next to my bed, so it was easy to ask for help.
The rooms were more soundproof than the average bedroom, but not completely. I brought earplugs to sleep in, and I was glad I did, because the patient in the room next door was noisy. I had a lot of trouble falling asleep. I was anxious about the whole thing, and I couldn’t relax. I got up to go to the bathroom, and eventually fell asleep after that. I think I slept about 4 1/2 hours. I woke up at 20 til 5. I was going to be woken up at 5 anyway, so it worked out. I woke up because I was so congested I couldn’t breathe. That’s a regular problem for me because of the benlysta, and while it’s not the sole cause, I think it contributes to my sleep symptoms.
I’m hoping I was asleep long enough and deep enough for the computer to get the information it needed. My biggest worry is that they’re going to tell me “everything is normal”, because it isn’t. I have nights where I continually stop breathing, and it feels awful. I get afraid to go to sleep. Some nights are worse than others. Certain medicines make it worse, so if I’m lying there in pain in the middle of the night, I can’t take anything. I can just lay there and hope I fall back to sleep incidentally. I almost always wake up with a headache in the morning. I don’t know how often my breathing stops in the night. Sometimes I remember it, but there are probably more times when I don’t.
My next appointment with the neurologist is on the 31st. I will probably get the results from both the sleep study and the nerve biopsy. My next benlysta infusion is the 28th. I have an appointment with another neurologist on February 3rd. I’ve had the appointment since before I started going to a local neuro, and I still would like to go for another opinion.