Sleep Study #lupus

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.




  1. Having had 8 sleep study’s and 9 coming up soon, I definitely feel for you. I hate the whole thing from start to finish. Its a horrible test. Everyone should be given a sleeping pill as part of the study because I never sleep more than snatches at best.

    • Insurance companies around here are pushing the at-home sleep study, I guess it’s kinda like wearing a holter monitor on your face while you sleep, and I was supposed to do that but my insurance is one of the ones that prefer to do in-office studies. I guess the at-home ones don’t provide as much information, but it sure would be easier. My doctor doesn’t particularly like it, but says he has to use it. It would be interesting just to try though. 8 sounds like a lot when I’ve only had one. Do you get used to it?

      • NEVER! I have never slept more than a few minutes at a time with them. They have to be re-done fairly often to make sure everything is correct on the settings and I have had problems including surgery so I have needed extra studies. Hopefully this next one will be the last for a while. I cant stand the feeling of all the wires and the O2 shoved up my nose and all the leads and goo everywhere and the not in my bed issue (cant sleep anywhere else well). Yuck. I hope yours shows that they can help you, but usually they put you on CPAP during the study if you need it for titration, so that night may not be representative of your worst issues.

      • Thanks MO, all I can say is that I am one eclectic gal! I really feel for younger people who have such terrible struggles and ChronicallyIll has more than her fair share, anyone’s fair share really. She is one tough cookie and I was not nearly as smart as she, having waited until I couldn’t walk before getting help myself.

  2. Jill, This sleep study stuff intrigues me. I have had problems with sleep since being on steroids for my adrenal insufficiency, and have tried drugs drugs drugs! Some work for a while, then it is as if I got immune to their effects. I believe my circadian ryhthm is completely off…..all fucked up. I am seeing my doctor this Friday to talk about my sleep. Wonder if he will have me do one of these crazy tests. Hope not.

  3. I had a sleep study in January, and was miserable the entire time, much like you. The doctor said there were no apneas and no O2 issues (even though like you, I stop breathing at night). He did say “You didn’t sleep well that night. Well no shit, doc…” His explanatiin was this: it must be Chiari-related. Just avoid caffeine and try to stay on a regular schedule”. Really? That horrible experience for that piece of sage advice….

  4. First of all “thanks” for writing. I love your blog. I don’t feel so alone. I don’t have half of what you have but I can relate to a lot.
    About the hot showers: hot water lowers the blood pressure. People often think it raises your blood pressure but it lowers it and could make you feel sick to your stomach and light headed and headaches etc…
    Also, I am sending you a link to Vegan Potato Leek Soup.
    I dunno if you can eat it but it is very tasty if you can!
    Easy to make too.
    And quick when you are tired.
    You can freeze it as it makes a lot. Just wait for it to cool and pour into a ziploc gallon freezer bag.
    * I leave out the fresh rosemary cuz I can’t get it to blend.
    * use no salt added veggie broth or chicken broth if you want

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