🔗 Share this article

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a