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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort around one eye that persists for three hours.

About one in 1,000 people are affected by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient 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? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a