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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 group of students, when a intense pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind one eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer 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 condition worsened through her youth. Drinking in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists 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 reassuring advisor guided them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a