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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain bloomed behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred 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.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day 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 periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. 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 illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist 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 has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a