Unbearable Pain: A Personal Fight Against the Mysterious Pain of Cluster Headache Syndrome
It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.
The attacks returned frequently that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around one eye that lasts up to several hours.
Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky 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, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.
Ancient healing texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more 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 2021; a calm advisor talked them through oxygen therapy and medication until the attack eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known people.
But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are handled with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
