🔗 Share this article

It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

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

The disorder were only officially classified by global 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 artery that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a