Unbearable Suffering: My Struggle Against the Puzzling Suffering of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with intense pain behind a single eye that persists for several hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from 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 episode inside a facility.
Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition note this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.
Official guidance on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.
The national guidance need updating to reflect a
