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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. Then came quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that persists for several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure 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 hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a