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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent 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 concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

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

It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a