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!

Why Am I Doing Better?

I helped paint a bathroom off and on all day. Taping, painting, painting again. Breaks. Like yesterday, I started off kind of rocky--it seems like mornings are the worst as far as my muscles cooperating. I am so STIFF in the morning. But evenings are worst for the nerve pain, pins and needles, etc.

Also like yesterday, I was able to do so much more than I have been able to do in the last few months. I am definitely on the mend for now.

I feel very strongly that the Lord giveth, and the Lord taketh away. My health began a dramatic, upward climb on Wednesday, for no apparent reason. If I am on Avonex, that certainly would not be the reason. If I am on daclizumab, it is a little early for progress like that, and it was not a week after the shot, which I would expect based on natalizumab stories. If it were from the increased desipramine (as this upturn occurred as that medication began to help my pain), how is that possible? If it were PT, why now? And why so suddenly, after a sharp downturn in health the two previous weeks? There does not seem to be a rhyme or reason to it, except what I felt Friday night in the Lord's house: The Lord giveth, and the Lord taketh away.

Sensory:

-Pins and needles: 1, woke up with them, then none all day
-Tingles: 0
-Dysesthetic pain: 3, also woke up with it, then not much all day
-Paresthesias: 2, woke up with the electricity in my legs

-Numbness: 2
-Vision: 0
-Nerve pain: 3, evening
-Hearing: 1

Motor:
-Walking: 1, stiff in the morning, better as the day went on
-Sore muscles: 2

-Spasticity: 3, in the morning, got better, worse as I was painting--my hand would suddenly cramp. OW! And at one point my leg cramped and went out on me, and I almost fell off the ladder.
-Weak muscles: 2

-Endurance: 4, I took breaks, but I did pretty well with the painting project. I did wilt pretty quickly when I was working near the hot lights, near the ceiling.

-Fine motor: 2

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 4, but I was doing physical work--so pretty good!
-Balance: 0

-Sleep: 0

-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 8, ruined my evening

Emotions: Fine. Feeling a sense of wonder that I have not collapsed back into an MS heap from all this physical work. Part of the wonder is wondering when/if that is going to hit again.

Not Bad

I had another good day. Not as good as yesterday, but much better than earlier this week. Hopefully things are on an upward trend.

Sensory:

-Pins and needles: 0
-Tingles: 1
-Dysesthetic pain: 5, burning skin on front of thighs
-Paresthesias: 0

-Numbness: 2
-Vision: 0-1
-Nerve pain: 0
-Hearing: 1

Motor:
-Walking: 0
-Sore muscles: 2 until PT worked on my shoulder--ow!

-Spasticity: 4, especially quads, also calves and upper arms
-Weak muscles: 3

-Endurance: 4

-Fine motor: 0

Cognitive:
-Processing: 0
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 5
-Balance: 0

-Sleep: 4, six hours, still struggling with temperature--too hot, then too cold

-Bladder: 2, medication I am still guessing
-Proprioception: 0
-Swallowing: 1
-A: 5
-B: 0

Emotions: Fine. Calm.

Not Getting Worse

I seem to be holding steady. My walking was worse today, but pain and everything else remained constant.

I had a very painful day on Wednesday. And so much fatigue. I was ready for a nap by 10:00. I emailed the clinical study team and spoke with Alyssa, who asked if I want to come in on Monday. Honestly, no, and that was what I told her. At this point, I would decline steroids, so there is no point in going in before my previously-scheduled appointment next Friday. Alyssa asked me to contact them again today (i.e. two days later) to confirm that I really do not want to come in on Monday.

Thursday was overall my best day this week, with not much pain and even less fatigue. But my quads got all spasticitized (tm ;) again.

Today was worse again. Boo. But I still told Alyssa that I do not want to come in. I did want assistance with managing my nerve pain--the burning skin has gotten pretty bad. I was advised to increase my desipramine. Fingers crossed that the dry mouth does not increase with the dose. And fingers crossed that this helps, because sometimes I am ready to tear my skin off.

Sensory:

-Pins and needles: 3
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 4

-Numbness: 2
-Vision: 0
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 6, slow, sometimes needing to hold on to someone. Feeling like my legs would buckle--weakness. But okay for short distances.
-Sore muscles: 4, quads mostly

-Spasticity: 4, quads
-Weak muscles: 6

-Endurance: 6

-Fine motor: 0

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 3
-Balance: 0, not counting in the dark

-Vertigo: 0

-Sleep: 6, I had to get up super early this morning.. 5:45!

-Bladder: 1, from medication
-Proprioception: 0?
-Swallowing: 0
-A: 0
-B: 0

Emotions: Fine. I had a good day.