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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent 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 two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a