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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate 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.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially 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 incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global 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 blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority 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 dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are managed with abortive treatment only. More prolonged 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 side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a