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It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent 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, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a