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It began on a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid stabs, like lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a