Excruciating Pain: My Fight With the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly 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-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often begin with severe discomfort behind a single eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.
What unites patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Understanding 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 took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.
National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The official guidance need updating to reflect a