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It was a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain erupted behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, 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 winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a