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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort around one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support 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 illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, 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 liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a