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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain behind a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support 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 illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic pain 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 liberties we don't value until they're gone,” she says. She remembers obtaining 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 first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a