Unbearable Pain: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome
It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain around one eye that persists for several hours.
Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs 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 facility.
Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder note this.
In the late 1990s, researchers published the results of a study for which they had induced 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 circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority 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 symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
