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It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, 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 advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a