Excruciating Pain: My Fight With the Puzzling Suffering 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 class, when a sharp pain sprang behind my right eye. Then came quick jolts, like electric shocks. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with severe discomfort behind a single eye that persists for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.
One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate 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, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.
It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.
Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The national guidance need revising to reflect a
