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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain around one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. 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 steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

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

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists 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 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a