Full-Blown Agony: My Struggle With the Mysterious Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, 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 routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with severe discomfort behind one eye that persists for three hours.
About 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Ancient healing texts suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European 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 occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition note this.
In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of 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 activity.
The official guidance need updating to reflect a