Disclaimer, but not really:-

This isn’t a medical guide. It’s not a balanced overview of Cluster Headaches. This is me – living through it, writing in it – writing currently in an episode with it, trying to explain something barely researched, often disbelieved, and impossibly brutal… while also coping with it by making terrible jokes and wearing equally funny t-shirts – my least destructive coping mechanism I think you’ll agree.

There will be SHOUTING. There will be dark humour. There will be how I came to know I had Cluster Headaches during the VERY REAL horror of Halloween 2017. There will be ridiculous metaphors about power tools and how I wish I was in space right now.
If you’re looking for a tidy article with clean bullet points, gentle encouragement and inspirational quotes about healing journeys from incurable conditions – this isn’t that.

If you want reality? Stay.
If you relate? I see you.
If you don’t? Buckle up. We’re about to go into the unhinged reality of living with Cluster Headaches

I Am Currently In A Cluster Headache Episode.

I’ve mentioned that I get Cluster Headaches before, but I’ve never really explained them. There’s a few reasons for that. One of them is because nobody knows what they actually are – and the second you say the word headache, people downgrade your entire severe pain experience into, “Oh yeah, I get migraines too.”

No. Absolutely Not.

Cluster Headaches are not migraines. They’re not even in the same family. If anything, they’re more comparable pain wise to giving birth. And since I’ve done both, I feel fully qualified to say: Cluster Headaches are far more painful than the most painful parts of labour.

I don’t even love that comparison either, because here’s the thing:
You can choose a less painful birth.
You can’t choose to skip the pain of a Cluster Headache.
And you’re not in the active part of labour six weeks at a time, twice a year, with your eye exploding at 4am.

I also experience migraines, so I know exactly how they feel – but cluster headaches aren’t in the same league. This isn’t about gatekeeping pain; it’s about recognising that comparing two different conditions can unintentionally dismiss the severity of one.

To give an example: I have reactive hypoglycaemia, which causes episodes of both low and high blood sugar. But I would never say to someone with diabetes, “I know exactly what you’re going through,” because reactive hypoglycaemia isn’t diabetes. It’s not as severe, and it’s not as life-limiting. The comparison might seem close on the surface, but it falls apart when you look deeper – and that’s exactly how it feels when cluster headaches are compared to migraines.

So What Are Cluster Headaches, Then?

Here’s the clinical answer – and then I’ll tell you what it actually feels like:- Cluster Headaches aren’t exactly headaches. They’re a neurological disorder.
They cause sudden, severe, one-sided attacks of pain – usually behind the eye – that spread through the face and skull like someone’s suddenly decided to test out the newest Black & Decker drill bit by driving it straight through your eye and deep into your brain.

The pain lasts between 15 minutes to 3 hours, multiple times per day. That’s right. You can get one, recover slightly, and then get another one a couple hours later. And this can happen every day. For weeks. Or months.

These cycles of attacks are called “episodes” or “clusters.” Mine happen roughly twice a year – thanks to the sheer audacity of the Earth spinning on an axis – and they last for several weeks. For many people like me, the attacks are seasonal: they hit around the same time of year, and often at the same time of day.

For me, that time is usually 1–6am, because apparently my brain enjoys torturing me when I’m at my most vulnerable. It’s like being woken by the world’s worst alarm clock, one that hits you in the face with a searing ice pick and screams through your eye socket.

Why Does It Happen?

Scientists don’t fully know.
It’s thought that Cluster Headaches involve the hypothalamus – the bit of your brain that controls circadian rhythm, temperature, and other really useful things – except in this case, it malfunctions and starts throwing neurological tantrums.

There’s a genetic component too. My dad had them. His brother had them. So I guess my hypothalamus is just continuing the family legacy of being an absolute nightmare (I’d have preferred a family legacy of money, thanks Dad). I’m just hoping to all of the God’s I don’t even believe in that my son doesn’t get them too.

What Triggers Them?

Even the tiniest everyday things can trigger them:
– Alcohol (not a problem for me, I’m teatotal)
– Strong smells (RIP the LUSH purchases I just got for self care reasons, it’s now self care NOT to use it)
– Exercise (yes, any type of exercise, like basic walking can literally give me a Cluster)
– Heat (windows open in winter, and no hot baths or showers – RIP my intergalactic bath bomb AGAIN)
– Seasonal changes (they’re often triggered within 2 weeks of the clocks changing – cheers, British Summertime)

And no unfortunately I can’t avoid season changes.
I don’t think anyone’s researched what exactly happens in space – you know, when you’re not trapped on a dystopian hell ball spinning on its axis causing seasons – but if any scientists are reading this, I’ll go. Genuinely. Ship me to the space station and scan my brain. If Katy Perry can go, I can go FOR SCIENCE.

The “Suicide Headache”

I don’t like the name, but I get it, unfortunately too much.
Cluster Headaches have been nicknamed this because of how completely unlivable they can become during a cycle. There’s not a lot of treatment, the medications often don’t work, and the attacks destroy your ability to function. You’d do ANYTHING to make them stop, yes ANYTHING.

They ruin sleep. They destroy routine. They wreck your ability to parent, plan, or even rest.

And in between attacks, you don’t always get relief. That’s when the shadow headaches hit – low-level (well, compared to the attacks), gnawing pain that follows you around all day like a ghost of the last attack. They’re more similar to migraines than the full cluster, but that doesn’t mean they’re “mild.” It means you feel like you’ve got flu with the ghost of last nights Cluster attacks while waiting for your next severe head explosion.

Mental Health & Cluster Headaches

They mess with your brain. I mean that literally.
People with Cluster Headaches often deal with depression, anxiety, rage episodes, and emotional dysregulation – whether directly caused by the condition or from just having to live like this.

I’ve had full meltdowns from how tired I am of hurting.
I’ve joked through agony because otherwise I would scream.
I’ve gone off raging and then realised 15 minutes later when the pain starts, oh no, sudden bouts of PMT like rage are a symptom of an incoming cluster and now I have embarrassed myself and am in the worst pain of my life.
I’ve doubted my own pain because people don’t believe me or downplay how much pain I am in.

But I’m not making it up. I really WISH I was.
This is my reality, and I’m still here. Somehow.
And I thought it was about time I explained what that actually means for me.

My Diagnosis

When I look back, I can see that I had cluster-like attacks even as a kid. They were rare, more like weird one-offs than part of any episode, and then they just… disappeared.

Until I had my son.

He was born in February 2005. By April, I was in agony. The pain in my head was unreal – and not just once, but repeatedly. I went to the GP, and they told me it was probably dehydration from breastfeeding. I tried electrolyte drinks. Upped my water intake to absurd levels. Nothing helped. The pain didn’t stop. And now I wasn’t just waking up for night feeds (which I actually loved, by the way), I was being yanked from sleep by the worst head pain I’d ever had. I was exhausted.

I went back again. This time they said sinusitis and gave me meds. That didn’t help either. No GP ever seemed concerned. I just learned to struggle through it, waiting for the “sinusitis” season to go away.

Flash forward to October 30th, 2017. My son is now 12. Over the years, I’d been told again and again it was sinus problems or tooth-related. I went to the dentist nearly every single September, convinced I had abscesses – I often get searing tooth pain from jaw bracing due to the sheer intensity of the attacks. I’ve even cracked teeth from clenching so hard through the pain. The attacks had become more seasonal – April and September/October – but they didn’t show up every year, which made them easier to dismiss. I gave up trying to get help. I couldn’t get doctors to take my pain seriously.

But that day, the day before Halloween (which feels a bit on the nose, considering), I got hit with a sudden thunderclap headache. My eye hurt like hell – visibly swollen, drooping, and red. It was the worst headache of my entire life.

When my son got home, he found me in a heap on the floor. He took one look at me and my eye and said, “You need to go to the hospital.” I’d waited for him to come home before deciding, but honestly, I’d been lying there wondering if I was having an aneurysm. My uncle had died from one, and this was that kind of pain I’d read about.

At A&E, the doctors were obsessed with my eye, shining lights in it while I was in the middle of another attack, and I snapped. I said – and I quote – “I will take my eye out and hand it to you. I don’t care about my eye. You need to look at my head. It’s terrible. I think it’s VERY bad.”

I hadn’t even seen my eye yet hence not understanding all the fuss – I just knew it hurt like hell and my son and the doctors looked panicked. I took the above photo in the hospital to see what they were seeing. I still didn’t think my eye was that bad. Looking at it now though? Yeah, I get why he was worried.

After MANY HOURS, tests and a spinal tap (because they started to suspect a brain bleed too), I was finally diagnosed with Cluster Headaches. The doctor seemed oddly excited about it — apparently because they’re rare — so I said:
“Oh great. I’m so special and unique. Now let’s talk about drugs or something. Make it stop.”
He replied, “Well, unfortunately, the only real way to help the pain is caffeine and oxygen. But your oxygen is at 100%, so I don’t know how well that’ll work. You need to have as much Coke as you can stand.”

My son, hearing this, looked horrified and said:
“I don’t think that’s a good idea, Mummo.”
Confused, I asked, “Why?”
And he said: “Cocaine is bad.”
Despite everything, I laughed.

Since that Halloween horror that lasted weeks – and gave me a spinal tap headache they swore was just as rare (it wasn’t) – I’ve had Cluster episodes almost every single March/April and every single September/October. That first diagnosis didn’t mark the end – it was just the beginning. Every episode since has been either just as bad or, somehow, even worse.

And unfortunately, that tracks. Cluster headaches often get worse in your 30s, for reasons science still hasn’t figured out – probably too busy investigating whether my eyeball still exists after being metaphorically drilled through.

What’s My Copium?

Aside from dark humour and buying far too many Jellycat bears, my main tools are oxygen and Red Bull.

I did try sumatriptan – but my GP gave me tablets. I took them, of course – I was desperate, and I had no idea that tablet form is basically useless for Cluster Headaches.

They didn’t work at all. Instead, they gave me intense chest pain, and when I googled it in a pain spiral, I found out why: sumatriptan only works when injected for Cluster attacks. Too slow otherwise. Cheers for the heads-up, doc.

Oxygen and caffeine don’t abort an attack for me like they do for some people, but they do shorten the attacks by up to half the time (sometimes). On their own, neither does much. But together? They’re better. Still not great – but better. Nothing helps the day time flu like symptoms, mood changes, or shadow headaches.

Mentally? They wreck me. It’s hard not to get depressed when you’re in extreme pain for 6–8 weeks, twice a year. I also have bipolar disorder, and the sleep disruption and routine shift from cluster episodes can tip me into a full-blown mood episode. Last year, that happened right here – on my blog. Cluster season hit, and afterwards I plunged straight into a depressive/mixed episode that lasted for months.

There’s not a lot I can do to prevent that. I already take Quetiapine every night, and it’s not exactly a lightweight med – it usually knocks me out. Cluster pain still wakes me up through it. That should tell you everything.

And it’s not just the attacks. I feel like I’ve got the flu most days during a cluster cycle – shadows that hover all day, the constant threat of another hit, and weird triggers like heat, movement, or strong smells that can set one off in the daytime. I’m even more disabled than I am out of an episode for those 6–8 weeks. Twice a year.

My dad’s clusters stopped in his late 50s, which is apparently common. I’m 41 now, and I’m clinging to that hope. But more than that? I hope my son didn’t inherit the gene. He’s had a couple of one-off cluster-like headaches and every time, I spiral. Watching him in that kind of pain would be the one thing I couldn’t handle. It’s the only thing I can imagine worse than the pain of cluster headaches: seeing him go through it.

Final Thoughts (Before the Next One Hits Me in the Eye)

I wish I could end this post with a cure. Or some tidy, “I bought into this MLM woowoo crap and now I’m cured” inspirational quote. Something helpful. Something hopeful. They aren’t caused by stress you can avoid, which is actually good, because I’d have them far more often.
Cluster Headaches don’t offer tidy endings – they just leave you bracing for the next round.

All I can offer is this: if you’ve read this far – whether you have clusters or not – thank you. Truly.

If you do have them: I’m sorry. I get it. I really, really get it.

And if you don’t? Maybe now you understand why I sometimes look like I haven’t slept in a month, talk like I’m possessed by caffeine, struggle to maintain mental stability and make too many jokes about orbital drills. This is about survival.

Now, if you’ll excuse me – it’s suffer o’clock. I’m going to go crunch my entire body into weird contortions on the sofa, surrounded by bears, and pray to the gods of oxygen and overpriced coffee.

Stay soft. Stay caffeinated. And if anyone ever tells you it’s “just a headache/migraine,” feel free to hand them this post – and know I’m eye-rolling hard with you in solidarity at the way people continue to downplay severe pain, despite Google being right there.

Heres the song for the post, where’s your head at? Also it kind of sounds like a cluster headache attack. DROP IT.