🔗 Share this article

It began on a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major 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 progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a