Full-Blown Suffering: A Personal Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often start with intense discomfort around a single eye that persists up to three hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.
National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some people.
But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined 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 discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
