Full-Blown Pain: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome

It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 major concert, only to have an attack inside a facility.

Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, 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, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a