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It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain around one eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began 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 having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “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 definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, 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 robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, 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 triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a