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It began on 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 sharp pain erupted behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, 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 GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically start with sudden, excruciating pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding 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 attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability 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 cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in diagnosing the disorder explain 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 imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a