Unbearable Agony: A Personal Fight With the Puzzling Pain of Cluster Headaches
It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often begin with severe pain behind one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst 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 the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the disorder explain this.
In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced 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 molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. 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 calm volunteer guided me through oxygen treatment and medication until the attack eased.
National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The national guidance need revising to reflect a
