Excruciating Pain: My Fight Against the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.
The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with severe discomfort around one eye that persists up to three hours.
About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe 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 documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive 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”.
Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.
Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.
But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidance need revising to reflect a
