🔗 Share this article

It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

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

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a