2019

Circadian Rhythm Disturbances in Huntington Disease

I stopped taking melatonin a few weeks ago. It wasn’t initially harder to sleep. In the last week or so, I’ve felt the cycle shift. I’m up about an hour later (both in the morning and at night) almost every day. A couple of weeks ago I was sleeping (and being sleepy) at 9pm, waking at 6am. Now I don’t sleep until 2am and can’t get up until at least 10am. I’ve also been napping mid-day, sometimes several times, so tired I couldn’t get up to work. I’ve gone through my usual attempts to have more energy. Resisting napping. Regular exercise. I take Zyrtec for asthma from seasonal allergies. It shows up it its most annoying form as fatigue. But that’s not it, this time. I’m still sleepy for hours after I wake up and immediately after naps. And I sleep 12-14 hours a day.

Melatonin in HD: lower levels and improper timing

As a teenager I was a ‘night owl’ and required the usual extra sleep we now know they need. Later I had kids, was working and going to school, and was consistently sleep deprived. As an adult, I’d wake up after 7.5 hours, like clockwork – as long as those hours included the interval 4-6am. In the last decade with HD, it’s increased to 9-10 hours. It’s not just how long I’m in bed – it’s actually sleeping.

I bought a light box a few years ago and use it in the winter. I have great sleep playlists and use earbuds if necessary. I do all the usual recommended sleep hygiene including limiting screen time at night, not eating late, sleeping in the cool and dark.

Brain disorder-specific sleep issues

Hypersomnia, melatonin disturbances, and circadian rhythm disturbances can’t be fixed with normal sleep hygiene.

Neurological diseases cause sleep problems. So for the next part of the experiment, I’m resuming the melatonin and I’m going to try to reset the clock. If I can’t back it up, I’ll do a progressive advance. I’m shopping the melatonin TODAY. And I’m in a place with lovely amounts of sunshine, so the therapy starts in the morning.

2019 May 13: I’ll update over the next couple of weeks.

Update 1: that day, I took 4x 3mg melatonin at 8pm and, as a last resort, and advil and a quarter bar xanax. Woke up at 1am and took another advil. Was back to sleep in half an hour. Woke at 9am, napped at 10:30. Groggy all day, blamed the xanax.

Update 2: the next day, took 4x 3mg melatonin and an advil at 8pm. Slept 9pm – 9:30 am only waking once, briefly. Groggy all day, blamed the melatonin. Planning to half the dose tonight.

Update 3: It worked! The next few days I started with 5mg and increased to 9mg and sleep was increasingly regular. I moved the dose to 7pm, as it takes a couple of hours for me to get sleepy. I’ve now been sleeping about 9pm, waking to the alarm at 7. I don’t wake during the night unless there’s some other issue. And I don’t feel groggy all day. This is consistent over a couple of weeks.