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It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain around a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing 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 believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a