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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks 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 freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a