🔗 Share this article

It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around one eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties 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 facility.

---

Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition 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 misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a