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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Multiple 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 paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, 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 failure to organize daily activities around erratic pain took its toll. 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense 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 head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a