🔗 Share this article

It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind one eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually 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 clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, 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 reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a