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It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by quick stabs, like electric shocks. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% 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, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, 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 robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent specialists in treating the condition explain 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 brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a