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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate 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 described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, 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 attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists 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 works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged 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 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