🔗 Share this article

It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe 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 portable toilet.

---

Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a