🔗 Share this article

It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists 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,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a