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It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came quick jolts, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly 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 commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually begin with sudden, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. 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 patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a