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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term 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 spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate 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 the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. 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 medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a