Insomnia

I've never had significant problems with sleeping beyond the occasional restless night or early waking. But this year I've had two recent but different episodes of insomnia, one pre-CLIPPERS and one current, which go beyond simply "not being able to sleep". I don't know if they are stress-related, CLIPPERS-related or prednisolone-related. In both cases I do get some sleep and am not incapcitated like Al Pacino but the regularity of the sleep disturbance is strange.

If only it was this easy

In April and May 2011 I experienced about 6 weeks of sleep disturbance where I would consistently wake up about 3 hours after I went to bed, then be wide awake for an hour or two, and then get back to sleep until morning. It became so regular I didn't need to look at my clock  - "I've woken up and it's dark, therefore it must be 2AM". Stress is an obvious cause of sleep problems and I was busy organising a conference which wasn't doing much for my stress levels (apart from raising them). On the other hand, my usual response to stress is early-morning waking rather than middle-of-the-night so it was definitely unusual. This insomnia resolved in May after I went on holiday, to be replaced shortly after by double-vision as the first overt symptom of CLIPPERS.

Since leaving hospital in September, I wake up almost without fail between 4AM and 5AM every morning and don't go back to sleep. There is some variation as occasionally I wake before 4AM (disaster!) or after 5AM (victory!!). Sleep disturbance like this is a fairly widely reported side-effect of prednisolone so as I am currently on a reducing dose (started on 60mg/day, now down to 20mg/day) hopefully this will improve.

2+2=5?
Now, it's thought that the Pons has an important role in sleep regulation. So could a condition like CLIPPERS, with lesions preferentially appearing in this area, interfere with normal sleep patterns? It is tempting to make the association but because my first episode of insomnia resolved before subsequent CLIPPERS symptoms and my second episode coincided with prednisolone I suspect I'm looking too hard for a connection. If my sleeping improves when I come off the prednisolone then it is probably just a drug effect.

Getting up in the small hours means finding things to do - typically:

• Catch up on tv (Battlestar Galactica, This Is Jinsy, The Walking Dead etc)
• Tidy the kitchen.
• Make bread.
• Write blog entries.
• Refine my plans for world domination.

The thing I quickly realised is that whatever I do, I must do it very quietly ;-)

Read other articles in this series at Living With CLIPPERS.

Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.