🔗 Share this article

It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. 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 worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky 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 small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started 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 recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority 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 dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a