Full-Blown Agony: My Fight Against the Enigmatic Suffering of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony 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 typically begin with severe pain behind a single eye that lasts up to three hours.
About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, severe agony around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family 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 obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Ancient medical texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.
In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.
National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications 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 skull where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
