🔗 Share this article

It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly hated 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 paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international 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 blood vessel which delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, 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 thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a