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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by quick jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She especially disliked 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms 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 described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

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

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a