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It began on a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a