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It was a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind one eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a