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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most 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 pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a