Unbearable Pain: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.
The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with severe pain around a single eye that lasts for several hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.
Still, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated 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 small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.
Historical medical records propose unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published 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.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose 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 inadequate therapies.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the episode passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
