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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated 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 incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a