Unbearable Agony: My Battle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain behind a single eye that lasts for three hours.
Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.
Ancient healing texts propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.
In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured 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 recovered.
Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.
National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
