Unbearable Agony: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around one eye that persists for three hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, 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 arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Historical medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.
The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.
Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.
But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.
The national guidance need updating to reflect a
