Cluster Headache Diary: Living With One of the Most Severe Pain Conditions
A first-person diary of cluster headache — one of the most severe pain conditions. Chronic pain, misdiagnosis, isolation, and life inside an unrecognized illness. cluster-headache-diary
Cluster Headache Diary
Cluster headache is one of the most severe pain conditions a human being can experience, yet it remains widely misunderstood and misdiagnosed. This text is a first-person diary of living with cluster headache — sometimes called “suicide headache” — told from inside the body, not from medical theory. It documents chronic pain, repeated misdiagnosis, isolation, and the long aftermath that remains even when the pain temporarily disappears.
A first-person account of chronic pain, loss, and life inside an unrecognized illness.
Warning
This text contains descriptions of chronic pain, loss, and thoughts of leaving life.
Preface
This text is not for pity.
I write. I was silent for too long.
Chapter 1
It lasted four and a half years, with short breaks. The pain left and returned without asking, without explanation.
January 30, 2024.
I woke up to my daughter’s call: “Mom, how are you feeling?” Her daily question, like a ritual.
Strange: I woke up not from pain. Daylight. And most importantly — my eye no longer felt like a separate wound in my body.
I lie still, listening to myself. Silence. No pulse. No internal удар. Nothing struck from inside.
The first thought: something is wrong. Why is the sun so bright? Maybe I’m dead?
When pain disappears, fear takes its place. You’re afraid to celebrate, because silence feels like a mistake. Afraid that at any second it might return.
That morning was not happy.
I still can’t believe the pain is gone. It was an event. But I didn’t believe it was freedom.
The body lives on tiptoe, barely breathing. As if any movement could bring everything back. The pain is gone — but the body remembers. And waiting is no easier than pain itself.
Chapter 2
September 2, 2019
This date carved itself into my memory. Not like a holiday. Not like a birthday. Like an invasion.
That morning I woke up with pain in my eye. Not irritation, not strain. Cold. As if the eye socket were filled with ice. The eye — full of ice shards.
I went from doctor to doctor. Diagnoses fell like coins from a broken slot machine: cataract; “everyone has headaches”; “take a pill”; “go on vacation”; osteochondrosis. The most convenient diagnosis.
“Wrong daily routine.”
“Not enough movement.”
“Too much stress.”
I came to appointments barely able to move my head. I listened to explanations that this was “nothing serious.” Meanwhile, I covered the windows with blankets so I wouldn’t see the sun. I locked myself in the bathroom so I wouldn’t hear sound.
The pain did not arrive.
It revealed itself.
Pain does not “begin.” It is discovered.
This was not an episode. It was another reality. Another air. Another body. Another life.
I often wanted to cover my eye with a bandage. Not see with it. Not irritate it. Like a raw wound sprinkled with salt or alcohol.
Absurd.
But hiding the eye under fabric felt like protection. Like a wounded animal: hide, cover, press close.
Chapter 3
Losses
First, I lost my car. Turning right became roulette: will I see a pedestrian or not?
The world became flat. A picture instead of space. Depth disappeared. My brain stopped filling in the gaps. The road was no longer a road — just an image on glass.
Sounds changed too. They stopped being background. Each sounded separately: clinking dishes, rustling bags, footsteps. A series of blows.
Every trip carried risk. One day I put the keys on the table. First “for now,” then “forever.” The car disappeared.
Next was the house. Without the car, it stopped being support. It demanded more care, more resources, more strength than I had. Groceries, doctors, medication — everything required travel. I couldn’t. I sold the house. Not out of desire. Out of lack of choice.
Then hair. Once a source of pride — thick, heavy, shiny. Now torture. Every strand felt like a nail driven into the scalp. Every touch near the eye like wire.
I endured for almost a year. Then I snapped. I took kitchen scissors. No ceremony, no symbolism. I just cut. Like crossing a line off a list.
The hair fell to the floor. A dull sound. As if something had been dropped.
Along with it — another version of me. Every loss brought relief. And at the same time — amputation. Less pain. Less “me.”
Then connections. Communication. Meetings.
Cut the same way.
No explaining unanswered calls. Postponed meetings. Unmet expectations. No justifying. No advice. No polite smiles.
Just to be left alone.
Chapter 4
When Even Toothache Is a Gift
Sometimes pain changes shape. And it almost feels like a holiday.
When my tooth started hurting, I felt relief. Not the eye. Not the same endless torment. Another signal. Another territory. Almost a break.
That pain had a name. I could point to it: “here.” A doctor could prescribe something. But it wasn’t about control. The body had already learned another taste of life.
Chapter 5
Night
Sleep — three, sometimes four hours. Waking always at four in the morning. From pain.
Pain became an executioner. Counting minutes of sleep precisely. Not allowing a single minute more.
Waiting. Counting time. Hoping it would end. Even briefly.
A short break. Sleep.
Then pain again.
Control. Eat in time so blood sugar doesn’t drop. So nausea doesn’t start. Take medication — not on an empty stomach, not too late, not too early.
Day and night merged into one corridor. With no exit.
Chapter 6
The Pact
I didn’t sign up for this hell — it was handed to me.
This was not a thought. It was reality: insomnia, pain, life in fragments. Time lost its edges. Everything stretched forward, without light, like a tunnel.
There was no exit. But one day memory itself brought something to the surface. A cheap drug. No prescription. Anaphylactic shock.
It was not a decision. Not a plan.
Just knowledge: the door exists.
A spare key.
It didn’t demand action. I never used it. It simply existed — like an object in the field of vision that draws the eye. Around it revolved memories, fragments of intention, almost-plans, almost-struggles. Not today. Not this time. Just a little longer.
Thoughts spun by themselves. Appearing and disappearing. In the space between sleep and reality. Without choice. Without intention.
It didn’t get easier. Nothing became clear.
There are children. That weight remained.
I stayed. Again. And again.
With pain. With loss. With sleepless nights. With silence — when even whispering hurts too much to scream.
Chapter 7
To You
It hurts. Not like it hurts someone else. Period.
This is reality.
If pain is nearby, it doesn’t need to be proven or compared. Words often don’t hold. This pain is silent — that’s why it isn’t seen.
Sometimes it looks like a narrowed eye. From the outside — irony, humor. In reality — a way not to open the wound. To reduce light. To reduce the world.
Postscript
The symptoms described here are characteristic of cluster headache — one of the most severe pain syndromes known.
Cluster headache is considered one of the most suicide-associated pain conditions due to its intensity and recurrence. Historically, it has been called “suicide headache.”
From the onset of the condition to a correct diagnosis, years often pass. Patients encounter misdiagnoses, pointless examinations, and inappropriate medications. They remain alone with their pain — without treatment and without understanding.
Ibuprofen and other NSAIDs do not work for cluster headache. This is not inflammatory or nociceptive pain. Prescribing them reflects lack of knowledge, not treatment.
Sumatriptan and related drugs may abort individual attacks but do not stop the cycle or restore life. They interrupt pain temporarily — nothing more.
Cluster headache remains poorly recognized even among medical professionals. Patients are told the pain is “not serious,” “psychosomatic,” or “exaggerated.” This is not because the condition is rare, but because clinical awareness is lacking.
There is an International Cluster Headache Awareness Day 21 March — an attempt to make visible a pain that is almost always lived alone.
Another part of that isolation is the response of family and social environment. When pain is not recognized, a person remains alone with it. “Everyone has migraines.” “You’re just tired.” These phrases are not malicious, but they erase reality. Pain without a name and recognition becomes invisible. A person continues living with it, explaining, justifying, doubting the reality of what is happening.
This text is not medical advice. It is testimony from inside pain that is not recognized and does not fit familiar ideas of suffering.
FINAL BLOCK — MAYAKOVSKY
I don’t need you. I don’t want you.
I know anyway — I’ll be dead soon.
If it’s true that you exist, God,
if the star-carpet is woven by you,
if this pain, multiplied daily,
is sent down by you — Lord, it is torture.
Put on the judge’s chain.
Wait for my visit.
I’m precise. I won’t delay even a day.
Listen, Almighty Inquisitor!
I’ll clamp my mouth shut.
Not a single scream
will escape my bitten lips.
Vladimir Mayakovsky died by suicide on April 14, 1930.
This is not an explanation.
Not a justification.
A historical fact.
Wow, I hate you had to go through that! It sounds really rough.
This is written with immense restraint and precision.
Pain here isn’t described it’s structured.
Thank you for this testimony.