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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began 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 condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally 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 fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, 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 symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific 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 consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of 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 signals.

The official guidance need updating to reflect a