Sleep Specialist

I saw the sleep specialist a few days ago. She is a PhD nurse practitioner working at a sleep clinic. I will call her Goola.

She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.

Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.

I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.

Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.

Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.

Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.

I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.

The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.

I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.

Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.

Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.

As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!