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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. Then came rapid jolts, like lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children 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 recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. 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 recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major 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 felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a