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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties 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 facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. 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 certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. 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, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a