I’ve been walking through the liminal space between identities – the former me, the relapse me, and the recovery me I’ve yet to meet. I thought I was alone, but the eerie “being watched” feeling wouldn’t leave. The liminal space didn’t feel empty. And unfortunately it wasn’t: I was struck by a cluster headache episode, as if pain itself had been waiting in the shadows with me.

It’s ironic, really. I’ve been clinging to the anchors of me that haven’t changed – the few constants that remind me who I am. And then the clusters come back to remind me of another constant I’d give anything to change.

I’ve written before about cluster headaches – what they are, how they differ from migraines, and my history with them. You can read that here. This post isn’t that. This is just me feeling pretty terrible at the start of an episode.

My Terrible Coping Mechanisms

One of my worst coping mechanisms is denial. Between episodes, I gaslight myself: maybe it wasn’t that bad, maybe I imagined it. Then, twice a year when the season changes, reality stabs me in the eye with a pickaxe and proves I wasn’t making it up. And on top of the pain, I grieve – because I’d convinced myself I wouldn’t have to go through this again.

I’ve been gaslit so much about these headaches – told they’re “just sinus headaches” told I must be making them up – that despite my diagnosis (and the family history; my dad has them), I started hoping I was. Between episodes it’s easy to believe, because I have no symptoms except the odd triggered attack from overexertion or smell. (Mint makes me sneeze at least seven times on the spot, which makes the dentist fun.)

So when I was in Asda a few days ago and an attack hit out of nowhere – bad enough to make me shout “OW!” out loud in the clothing aisle – I instantly grieved that this condition is real and the next few weeks are going to be incredibly painful.

Shouting is actually part of my better coping mechanism, alongside rolling around, shoving my head into the sofa, moaning, whimpering, and somehow still cracking jokes to my son through it. (“I wouldn’t wish this on my worst enemy, WHICH IS MYSELF, SO PLEASE STOP.”) It’s all I can do when oxygen and iced caffeine don’t work.

The Night of the Worst Cluster Attacks (Again)

I normally love the silence of 3-5 a.m. It isn’t lonely – it’s still. I can feel my son asleep in the next room, I watch Driving in the Rain in Tokyo videos, and the air is the best kind of cold.

But when clusters come, they steal it. The same silence turns to horror – bumps in the night inside my own head. I plead for the time to pass, for the sun to rise, for the relief of the worst being over.

Every attack is the worst attack ever, every night the worst night ever, because you forget how bad they are between attacks. Last night reached the “call an ambulance” level of pain – the kind where you wonder how it’s possible to feel that much pain and not be dying, and then you wonder how the hell you survived it.

The pain gets so intense my brain reacts like it is dying. My life has flashed before my eyes more than once – a memory reel of everything I love, every reason to keep fighting. I always get brave with my ED during cluster episodes because I suddenly see how much of life I’m wasting avoiding food. But when the attack eases, the illness floats back in like the tide.

Cluster Headaches and Recovery

I’m in a delicate place with recovery – the messy middle. I was hoping I’d be steadier before this cycle hit, but it came early just to mess with me.

Clusters mess with my appetite: I get huge, specific cravings before and after every attack. The bravery hits me because I’m in so much pain and feel like I’m wasting my life avoiding food so I’ll eat it. Only for the attack to be over, my ED to come screaming back, and then I feel guilt for eating so much extra like I’ve just binged on food when I have not. It’s rough.

Clippy (my ED voice) is furious with me. Clusters don’t end when the pain ends – there are shadows in between the more severe attacks: lesser but still intense migraine level headaches, severe fatigue from sleeping in two-hour snatches, flu-ish heaviness, dizziness, and this feeling that my head is too heavy for my neck. My body begs me to lie down, so I spend a lot of time horizontal. Clippy insists that if I’m lying down, I don’t “deserve” to eat what I normally do – and here I am, eating more than usual thanks to the cluster-induced cravings.

Clusters also tank my mood and mental health. The prodrome brings irritation and anger, and weeks of excruciating pain are just depressing. There’s no way to make any of this positive.

The Positive

Well, okay fine, if I think hard, there are some bittersweet things.

Clusters are genetic, and every time my son gets a headache I panic: oh no, is he getting them too? But he is lovely to me during one. He presses his hands to the painful side of my head and for a moment it grounds me – like Kevlar wrapped around a grenade, shortening the blast radius. He brings me iced coffee. Sometimes he stays up a little while so I’m not alone, and when he goes to bed he leaves a plushie with me so I’m not alone then, either.

He is my biggest reason to keep going. When the pain spikes, my brain runs a slideshow of him growing up. Going through the pain is the only way I get to make more memories with him. I wish my brain did that during mental illness, but at least it works when it’s physical pain.

What Now?

Not much. Everything upright feels like torture. Heat and activity trigger attacks (hence the one in the middle of Asda), so I’m doing the bare minimum adulting. My longest episode was eight weeks – you can’t stay horizontal that entire time, so I stagger through what I must.

There are longer posts I want to write, and maybe I’ll draft them lying down thanks to my Epomaker keyboard that lets me type completely flat. It even eases some of the ED guilt about being sedentary, because honestly, it’s all I can manage – especially in the evenings when the clusters are always worse.

But right now, survival is first. I’m keeping caffeine and oxygen on hand and riding it out. And at the same time, I still have to keep fighting every day to stay in recovery – even though it isn’t the first or foremost thing I can deal with when my head is in excruciating pain. I don’t have the energy to put my everything into surviving both at once. I’ll just have to get through somehow.

This time around I’ve noticed iced coffee works better than hot coffee, so I’ve been drinking a lot of it. I always used Red Bull during attacks because it worked better than coffee, and I assumed it was the taurine. I even started taking 2 g taurine a day – but honestly, it hasn’t touched the clusters. Then I tried iced coffee, and it hit me: it wasn’t taurine, it was temperature.

I always drank Red Bull ice-cold (because otherwise it tastes like what I imagine cat pee tastes like). That cold shock and caffeine combo works. So this episode, you’ll mostly find me with an iced coffee in hand, watching garbage on YouTube, maybe writing if I can.

Sorry, Not Sorry

Whenever I post while struggling, I feel pressure to make the next one positive – to prove I’m still “actually fine” and that I’ll bounce back. But there’s no way to wrap cluster pain in an aesthetic bow.

When did we all start pretending some things weren’t just utter shit? Toxic positivity demands that trauma, grief, and illness become neat, inspirational journeys. The people who push that are often the most negative – constantly reframing authenticity as negativity, which only shows how unhelpful it really is.

Sometimes life is shit, for no reason. In this case the reason is genetics and the season changing – two things I can’t control and no amount of self-care will fix. In fact, self-care is currently triggering cluster attacks: strong-smelling candles, wax melts, bubble bath, even my shampoo. Activity is out, too.

So maybe posting the reality instead of denying it is self-care. And maybe it helps me push back against that internalised toxic positivity – the pressure to polish the turd that is cluster headaches – when what I really want is just to post about it and feel less alone.

Had to be this song haha –