Sometimes, I get headaches. Whether they’re cluster headaches or migraines, I’ve no idea. But they hurt.
I’m going to call them cluster headaches for now, as the pain maps more accurately to that description than to migraines.
I’ve had them episodically since my early teens. 24 years later, here’s what I’ve noticed.
They last 3-5 days, with a background level discomfort on one side of face/head that can spike without much notice into an eye-watering stabbing pain that feels as if a spike is being driven through my head and eye.
Changing position from lying to sitting to standing can cause rushes of pain for a minute or two. Lying in bed at night, it’s impossible to find a position that isn’t painful.
I don’t get nausea, but I’m very often light sensitive which makes keeping in contact by text/FB/email etc v difficult, and working on a computer nigh on impossible. If I disappear for a few days, I’m quite possibly having a headache. It’s not personal.
Brain fog often accompanies these headaches. Brain fog itself can be strangely selective: some things are easier to think about and figure out than others during headache episodes. And, of course, it depends on the pain level. Thinking really does make my head hurt more.
I need to rest, rest, rest until it goes. This is not always possible with a 2 year old and running my own business. Activity sometimes makes it worse, sometimes seems to ease it, or at least distract me for a while.
If I’m really unlucky, I’ll have a 5 day bout on one side of my head, followed by 3-5 days on the other side. Whoopee doo.
Unlike other descriptions of cluster headaches I’ve read, mine don’t have me pacing the floor and thumping walls. I’ve learn not to fight them. Fighting only makes it worse.
Gentleness works. Gentle activity, gentle input levels, only gentle demands on my emotional and mental resources. And lots of rest.
Then, I wait. I wait for it to peak or pass. Peak or pass. I hate the uncertainty of duration and outcome, but I trust that it’ll peak or pass.
The headache sometimes crescendos, then I cry lots, then it fades and lifts. Sometimes it feels as though my back melts a little as the headache loses its grip on me.
After it passes, I have the joys of catching up on where I was a week ago, plus the build-up that’s accrued during the attack itself.
Oddly enough, I usually start craving chocolate brownies when the attack is over. I look out for the cravings as a sign of imminent release from the headache.
There tends to be a combination of physical, emotional and mental triggers to an attack.
Headaches sometimes come on when I’ve overdone it. They’re my body’s ultimatum: rest, or we will cause you some serious pain.
After the birth of our son, I had headache attacks every month or two. The combination of fatigue, not eating so well, the emotional demands of early parenting and readjusting our relationship, and figuring out this full-time job of parenting an infant, meant that life was full of attack triggers: physical, emotional and mental.
I watched for patterns. As each attack passed, there would be a distinctive change in my mental and emotional world. A different outlook. A different understanding. It seemed that each attack was a passage into a different way of being, a better way of being.
I came to see the headaches as growth spurts. Painful, necessary, ultimately beneficial.
I noticed a pre-pattern: I’d read and read and read too much before the pain showed up. The tension is already there, in my back, if I take a moment to notice it. But the drive to read became really strong. Reading has long been a solace for me, a retreat, a refuge. It’s somewhere I go, sometimes, to hide. But I can’t hide from myself: the headache will wake me up to that sooner or later.
I take a holistic view: my headaches are showing me something. It’s up to me to learn their lessons and find the medicine, in a broader sense, for them.
What am I not feeling? What am I blocking from my awareness? What am I not relaxing into? These are the questions I feel my way around, lying on the sofa with my head under a blanket to block out the light.
Maybe I’ve got it wrong. Maybe it’s just a physical ailment after all. There’s the family history to consider: my dad, brother, aunt, cousin, grandmother have all experienced these headaches. Some people have found relief after having their wisdom teeth removed.
Medication works for some people. I used to take migraine pills until my early twenties, but they had such strong effects I’m not keen to follow the medication route. If I had chronic attacks, I’d be reaching for the medication to maintain a basic level of daily function, I’m sure.
But the pattern is too consistent: attacks are preceded by a build-up of tension, and often dissipate with a big release of emotion which can also correspond with significant updates to my mental models of the world and how I see my role in it. I can’t rule out the emotional and mental parts of the pattern – and these can be inherited too.
Meditation has given me the introspection tools to handle more days than I would have liked of mindfulness-of-headache-experience, in the context of a wonderfully not-otherwise-hurting body, with more grace and ease that I would otherwise have mustered.
Gentle massage (too strong a massage can make it worse).
Snuggly blanket, with one side over my head for darkness.
Dance – gentle dance sometimes catalyses the emotional release that ends the attack.
Episodic pain (and hats off to people handling chronic pain) is a teacher.
It teaches you about letting go of control. It teaches you that you have to let go of control. You cannot control the pain. You can only put it off for so long.
It teaches you self-awareness – as a preventative, as a endurance builder, as a restorative.
It teaches you patience and forebearance, waiting for the fog to lift, the tension to retreat, the pain to ebb away completely.
It teaches you the lessons of unpredictability, learning flexibility, responsiveness, being alert and receptive.
It teaches you understanding for other people in pain.
It teaches you softness and tenderness – for to harden against it is to worse it.
It teaches you caution and restraint.
It teaches you perseverance.
It teaches you strength – that you are strong enough to endure, to bear it, and to come through it.
It teaches you love, care, tenderness, and respect for yourself.
I don’t like it, I don’t enjoy it, but in finding my own meaning in cluster headaches, I find a way forward.
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Sue Mahony PhD is gifted, autistic, and ADHD. She provides 1:1 specialist support for brains similar to her own, neurodiversity training, mentoring & coaching for organisations, and a wealth of articles on this website.
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