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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

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

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping 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 inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a