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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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

Historical healing records propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified 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 that supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a