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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after 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 recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a