Unbearable Agony: My Fight With the Puzzling Pain of Cluster Headaches

It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. Then came quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain behind a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need updating 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 cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a