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It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid jolts, like electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

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

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a