🔗 Share this article

It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. This was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

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

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidance on management recommend 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. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a