Headache Disease and Insomnia

Have you ever wondered which came first: headache disease, or insomnia? I have had both for as long as I can remember. Migraine disease started in childhood for me, as did my insomnia. Developing cluster headaches in my 30s was eye-opening when it came to sleep disturbances due to headache disease. This is when I started to question if the two are related in any way.

How are cluster headaches and sleep related?

Cluster headaches are linked to sleep in many ways. First, many believe they are linked to the hypothalamus because of their circadian nature. The circadian rhythm is our sleep-wake cycle. We get drowsy late in the evening, and we wake up with the light of the morning. Cluster attacks can hit at any time of day. However, a higher percentage of people get attacks waking them in the middle of the night.1

What has my experience been?

My first round of cluster attacks would hit me at 2 pm. But, my next cycle hit me at 2 am and 6:58 am. Interestingly enough, my insomnia would often hit me between 2 to 4 am even as a child. I also noticed that when I was in a cluster cycle, I would get really drowsy in the afternoon. I would fall asleep by accident. By day 3 of this, I’d find myself getting hit with additional cluster attacks. I also noticed I'd get hit with a cluster attack around 2 am, possibly because that was when my sleep cycle would hit REM sleep. In high cycle I’d get hit every 2 hours – because I’d fall back asleep, and when I entered REM I’d be awoken by the beast again.

How are migraine and sleep related?

The hypothalamus also plays a role in migraine, but it may not seem quite as clear for many as it does with cluster headache. Menstrual migraine is one example that highlights circadian rhythm. I often notice small differences in my circadian rhythm when a migraine begins. I might notice bursts of energy at odd times or even extreme fatigue during daytime hours. I’ll often be fatigued all day, but when darkness arrives I’m wide awake.2

What can I do?

Sleep hygiene is a great beginning point. I try to model my routines to follow my circadian rhythm. Learning tips and tricks from the community has helped. However, one thing I have to let go of is that my sleep will be ideal every night! The stress of perfect sleep was causing me more anxiety and hindering my sleep quality. I have spoken with my doctors so I have options for sleep aids.

I also refuse to nap. This is in large part a PTSD reaction to my cluster headaches. Before being well-managed, naps would send me spiraling into back-to-back attacks. Since my body rebels randomly in the middle of the day and thinks I need sleep (despite sleeping at night), I do various things to help. Caffeine, getting up to walk around, or going outside for a few minutes typically helps. I try my best to ensure I sleep during the dark hours and stay awake during the light hours.

How can I let go of the guilt?

I have learned along this journey that despite my best efforts, I’ll never get a perfect night’s sleep every single night. Headache diseases are very complicated, and while sleep hygiene can be helpful it’s not going to be the magical cure that stops me from ever having another attack. It’s a tool I can use to help me have a better threshold and help me feel better generally. But I’m over the guilt of enjoying life and getting to bed late or being frustrated that my body won’t fall asleep on time!

Is there science backing this up?

Research is still looking at this topic, and I do believe they will continue to uncover links for both those of us with migraine and those with cluster headache. A recent study of a small cohort of cluster headache patients found that even out of cycle, they still showed signs of insomnia.3

Do you experience a correlation between your headache disease and insomnia?

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