Excruciating Suffering: My Battle With the Mysterious Suffering of Cluster Headaches
It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense discomfort behind a single eye that persists for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.
Ancient medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in diagnosing the condition 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 activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs 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 diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a
