Unbearable Pain: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense discomfort behind a single eye that lasts for several hours.
About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.
What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent 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 hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.
Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis 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 winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient healing texts propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some people.
But leading specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.
The national guidance need updating to reflect a
