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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by quick stabs, similar to lightning bolts. 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 douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that persists up to three hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, 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 a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning 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 first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

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

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired 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 pain is that decreases nerve activity.

The national guidelines need updating to reflect a