Cluster Headaches and the Real Fear of Sleep

There is an insidious relationship between cluster headache attacks and sleep. Cluster attacks have a pain intensity considered “The most painful condition known to man” as well as the nickname “suicide headaches.”  These attacks can occur at any time of day or night, though often the attacks are nocturnal and occur most frequently in the hour of 2 am. Between these two reasons alone, it is no wonder that those who have cluster headaches do not have a healthy relationship with sleep.

Scared to sleep because of cluster headaches

Many nights, as 11 pm approaches, my mind begins to flood with emotion.  Of course, I am tired and seeking not only rest but escape.  However, my thoughts quickly remind me that once I go to sleep, my risk of having another attack escalates. There are times, I argue with myself that I have to go to sleep. Of course, there are also times when I am so scared to go to sleep that insomnia sets in.  For the past 3 years, the majority of my attacks have started between the hours of 2 am and my typical wake time of 7 am.  PTSD and sleep-related disorders are very real with this disease.

Cluster headaches are a chronobiological disorder

Cluster headaches are a chronobiological disorder. Chronobiology is the study of biological rhythms - daily, seasonally, and yearly.1,2 Having chronic cluster headaches does not make me exempt from this. Even though I am chronic, I have high and low times, which for me have been spring being the highest and fall being the second highest. Summer and winter are when I tend to have less quantity and shorter duration of attacks. 

Waking up in the middle of the night

Interestingly, it doesn’t feel as if it’s the pain of the cluster attack that wakes me up in the middle of the night. Often, I wake up and the pain will start within 30 seconds to a minute and quickly ramp up. I even have nights where I wake up at my “cluster time” and no attack occurs. 

Cluster treatments have a circadian effect

Researchers still try to understand what actually occurs during a cluster attack that makes the pain so intense and what part the hypothalamus plays in the chronobiological aspect. However, this leaves patients and even doctors confused as to how to best approach treatment. This has left those with cluster headaches with very few treatment options. What I found interesting were the treatments that are commonly used in cluster headaches that have a circadian effect:  Verapamil, steroids and lithium.3

The trouble with naps and cluster headache

One observation I have made revolves around napping. I experience periods of time when during the middle of the day I will experience extreme drowsiness. I would listen to my body and take a nap. However, I would either wake to a cluster attack or other times I would find the pattern would reemerge again for a few days. 

A nap leads to the worst cluster attacks

The last time that happened, I napped and had one of the worst onslaughts of attacks I’ve ever had. I was battered for 58 hours with back to back attacks with little time between. Ever since that time, if I experience daytime drowsiness, I not only refuse to take a nap but I also combat it with caffeine by either coffee or energy drink.

How I survive cluster headaches at night

The circadian nature of cluster headaches has made me acutely aware of my sleep/wake cycle. I find many of my survival techniques include attempting to keep this rhythm normalized. I take measures to stay awake during the day and asleep during the night. During the day I sometimes use energy drinks and going for a walk helpful in feeling more awake. In the hour leading up to sleep, I try to drink something soothing with chamomile, getting off electronics, and I’m even trying an acupressure mat as ways to get my body and brain to relax and go to sleep.

How do you survive?

Have you noticed the biological rhythms of your attacks and pain free times? Do you have tips or tricks that you use to help maintain healthy sleep/wake cycles?

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