Excruciating Suffering: My Fight Against the Enigmatic Pain of Cluster Headaches
It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around a single eye that lasts for three hours.
About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.
What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes 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 symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, 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 winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.
Historical healing records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in treating the disorder explain this.
In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.
Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.
But leading specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe bouts 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 injection into the area of the skull where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a
