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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned 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 cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked 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 worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account 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 spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a