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It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Ancient medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack 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 education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a