🔗 Share this article

It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation sprang behind my right eye. This was followed by quick jolts, similar to electric shocks. As the school day progressed, the pain eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks typically start with abrupt, excruciating pain around a single eye that peaks within a short time and continues 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 facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate 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 absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

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

Ancient healing texts suggest unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a