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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began 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 symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis 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 account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks 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 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a