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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid shocks, like 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 hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

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

Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many 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 teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. Longer or more intense periods require preventative medications 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 head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a