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It was a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain around a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms 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 facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

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

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more intense 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 activity.

The official guidance need revising to reflect a