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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. 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 pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks typically start with sudden, excruciating pain around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally classified 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 issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from 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 molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a