Unbearable Pain: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The headaches appeared frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe pain behind a single eye that lasts for three hours.
About one in 1,000 people are affected by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts 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 sweating. I have an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.
Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in treating the condition note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition 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 misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.
Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.
The national guidelines need revising to reflect a
