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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick jolts, like lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue 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 cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a