Unbearable Pain: My Battle With the Mysterious Suffering of Cluster Headaches

It began on a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a