Unbearable Suffering: A Personal Fight With the Enigmatic Suffering of Cluster Headaches

It began on a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around one eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started 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 deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical 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 major artery that delivers blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a