Cluster Headache

I was 14 or 15 at the time and loved to just sometimes hop on my bicycle, show up behind a friend's door and ask if they wanted to hang out. One such time I went to see if Tony would be up for it. His mom came to answer the door with a serious look on her face.

"Hey there. You should come again another day. Tony can't be with you right now, he's having one of his headaches."

And they weren't just any kind of headaches.

To be clear, "headache" doesn't give it quite enough credit.
What we're talking about is the most painful condition there is.

Nobody seemed to know what was going on, certainly not the doctors. The pain was horrible and painkillers were useless. The attacks came at the same time each day - for a series of days and weeks at a time - and then it just stopped, sometimes for a longer time and sometimes shorter.

A couple of years later, still having found no explanation to his recurring mystery headaches, Tony started spending more and more of his time in the library and in the computer class to do his own research. And one day a friend of his found an article about cluster headaches in a foreign publication. At last, after some additional Internet searches to confirm it, he was convinced that he had found a name for his condition.

Armed with new knowledge, he went to a neurologist. With a proper diagnosis, hope sparked again that he could be treated. 

But the doctors still couldn't find anything that would bring an end to it. Whatever they tried might help for a while, but have little or no effect when the next episode came. The illness was adapting and when they increased the dosage of medicines, their side effects also became worse.

Years went on and the torture kept picking up intensity. Now in his thirties, Tony was reaching the end of his line. Any dreams of having a normal life with work and hobbies were long gone, and his ever-increasing medications had taken his ability to walk. Laying in his hospital bed, afraid of the planned surgeries that would probably only hasten his death, he kept reading the forum posts of the CH community. 

And some of the stories there seemed encouraging - people had been able to treat themselves successfully with things like licorice tincture, supplement regimes built around vitamin D, and hallucinogens such as psilocybin.

Bringing these up with the doctors was met with hostility, and so he left the hospital and started getting treated by his parents instead. The battle would be long and full of mind-shattering pain: In order to start using natural remedies, he first needed to gradually stop using his current medications.

His agony reached its peak with six to eight hours of attacks each day. The illness had became chronic, with no pain-free days in sight. Fortunately, he managed to get a prescription for an oxygen tank, which helped cutting the length of the attacks.

Two more years pass. But the self-treatments work, and the monster finally loses its grip.

Overjoyed by having reclaimed his life, he wants everyone to know how to do it. So he goes to the hospital, tells the doctors what has happened and basically gets thrown out.

"You cured yourself? Have you no shame?"

But Tony isn't done. He has a life now, and a son - my wonderful godson. He spends his newfound life helping others who suffer from cluster headaches, and became a leading figure in the Finnish CH online community as well as traditional organizations. He's also given his personal assistance to many, many people - too many, to the point of burning himself out. In 2021 he was one of the final ten to be nominated "Volunteer of the year" in Finland.

And he's the finest person you could ever hope to meet.

---

I wake up in the night and check the time. It's 1:32.

There's a gnawing ache behind my left eye. I hold my palm against it and press my cheek, trying to open the airflow into my nostril. There's still a little time before it starts in full force, so I get up and walk to the kitchen.

I open the fridge, hoping there would be an energy drink which might help some. No such luck, so I take a couple of painkillers, knowing full well that they will have zero effect.

On the way back I peek at a mirror. My eye is bloodshot and wants to stay shut. A sudden sharp flash of pain pierces through and makes me groan.

I sit on the side of the bed and wait. Breathe in, breathe out. It's getting stronger. I start rocking myself side to side. It hurts more and more. 

It's as if there's some kind of creature behind my eye. It sinks its teeth in and squirms and I want to dig it out.

But instead I just cry and hold my head.

Please, please stop.

Everything else fades except the pain.

Way too much later, when it's over, I check the time again. It's 2:25.

I feel empty and tired and abused. The shadow of the pain still lingers.

After smoking a cigarette, which I really shouldn't be doing, I go back to bed.

It lets me sleep for two hours before having another go.

---

I was nearing my forties when my own episodes began. It runs in the family, and so my oldest child has it too. She also has migraines, which tend to act as a trigger for her CH attacks. As if the goddamn migraines weren't enough.

And that's still only about half the bad luck she was born with.

Speaking of luck, me and Tony often wonder what the hell could it have been that gave us both the same illness - according to Google, CH sufferers are about one in a thousand. (Maybe it was the god-awful Työmies cigarettes we once tried?) I guess we'll never know.

What I do know though is that if it wasn't for his help and expertise, both mine and my daughter's lives might be a lot different now. He's the reason we have it under control. I'm not against modern medicine in any way, but I'm afraid to think how it would be had we gone the official route. Our illness is a prime example of how healthcare can seriously lag behind in finding and employing treatments that truly work.

Tony, thank you so much for being who you are, and for all you've done for us. And I know it's not the most Ostrobothnian thing to say, but man I love you. See you again soon.