Unbearable Agony: My Struggle Against the Mysterious Pain of Cluster Headaches
It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically start with severe discomfort behind one eye that persists for several hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.
What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. 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 a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.
Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in diagnosing the condition explain this.
In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
