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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a