Excruciating Agony: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort around one eye that persists up to several hours.
About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, 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, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.
What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started 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 condition deteriorated through her youth. 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 bus home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs 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 episode inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical records suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in treating the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some people.
But leading neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
