🔗 Share this article

It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, like lightning bolts. 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 activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain around a single eye that lasts up to several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a