Excruciating Agony: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The headaches returned frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe pain behind one eye that lasts up to several hours.
About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began 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 symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “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 fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked 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 paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the disorder explain this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.
National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.
But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, 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 pain is that decreases nerve signals.
The national guidelines need revising to reflect a
