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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

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

Cluster headaches typically start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties 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 described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a