Excruciating Suffering: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense pain behind a single eye that persists up to several hours.
Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.
What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst 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 significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Prominent specialists in treating the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches 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 thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.
National guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.
But consultant neurologists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
