Skip to main content

The anti sleep study

Last Sunday night I went for my sleep study – an experience that was something akin to holding one’s eyes open with tooth picks and watching grass grow. For a test where they barely touch you, and all you have to do is sleep, it was torture.

The last time I did a sleep study I felt sure I’d never fall asleep, but I did fairly quickly.

This time, after falling asleep at work, on the bus, and pretty much everywhere else, suddenly I couldn’t sleep to save my life. Pastor Pat called it “performance anxiety.” That made me chuckle as it’s probably true.

Knowing how hard it would be to sleep at the sleep lab with wires dangling from everywhere, I did everything possible to ensure I’d be exhausted at the appointed time. I stayed up super late the night before, and got up early on Sunday. This backfired, however, as I fell asleep again Sunday morning and missed church.

I arrived at the sleep lab feeling about as awake as I’ve felt in weeks. Totally alert. Totally awake. Feeling great! Of course!

So, I listened to soft music and tried to get relaxed while the nurse spent almost an hour hooking up the other patient. He promptly drifted off to sleep – quite the snorer. I could hear him even though the place was supposed to be sound proof.

Then it was my turn. The nurse and I had quite a chat while she attached sensors to my legs, chest, arms, head etc. carefully running all the little wires to a central panel. She’d been a trauma nurse in the ER for years, so she was quite used to night shifts. Being incredibly curious and nosy about everything, I had to ask what every wire monitored and did.

Finally it was time to go to bed. I wasn’t ready. I could have happily chatted for several more hours. But obediently I went to bed. My mind hopped from thought to thought. I tried to relax. I tried relaxation techniques Carmen taught us at the Hermansky-Pudlak Syndrome conference. I tried “letting tension go” from my toes, then my ankles, then my legs etc…..no use. I tried thinking about the music I typically listen to as I fall asleep (they took it away from me in the sleep lab.) I tried praying, first my own prayers and then just the Lord’s prayer in hopes maybe the repetition would put me to sleep.

Part of the problem was they insisted I lay on the bed flat. I can’t breathe when I lay flat. The nurse through the intercom tried to assure me that all my vital signs were perfect – I could indeed breathe. But, I felt like I couldn’t, as if something heavy was sitting on my chest.

Finally at midnight she let me elevate the bed. She also put on the CPAP I hate so much. As usual, it wasn’t long before my throat felt swollen and sore. I kept feeling the urge to swallow, as though something were stuck in my throat. I’d relax, even start to feel kind of funny, almost lightheaded, then I’d snap awake again and have this urge to rip the mask off.

About 2:30 am the nurse came in to let me go to the bathroom. She says, “Honey, if you don’t go to sleep they’re going to make you come back and do this again.” Oh yeah, as if I’m not having enough trouble, a little pressure’s going to help.

She also put a heated humidifier on the CPAP. I have one, but it isn’t heated. It immediately cleared up the sore throat, and it was easier to breathe. I think I briefly fell asleep twice because I remember two dreams.

I dreamed I was at NIH, up late, and talking to Hilda, one of the nurses there. Oddly enough I never sleep well at NIH, and so often chat with the nurses until all hours of the night. Hilda’s a favorite. She’s since retired and is now helping out the HPS Network.

Then I dreamed I was in the car commercial, oh I can’t think of the name of the car – but it’s this supposedly German guy dressed in white and he announces he’s to “unpimp” the ride. Then, in one form or another, the tricked out car in question gets smashed to pieces and replaced by a plain white car. The man says “German engineering in the haus, yah.” Well, I woke up about the time the car got smashed.

I have no idea whether they were able to gather enough data to learn anything about my fatigue. Oddly enough, it had been better.

But since the sleep study my sleeping schedule as been as if I had jetlag and my sinuses are all screwed up. Go figure.


Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria