Unbearable Suffering: My Battle Against the Mysterious Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony around one 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, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around erratic attacks 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 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 recalls winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the condition note this.
In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured 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 felt better.
In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. 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 life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.
National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
