Excruciating Suffering: My Fight With the Enigmatic Suffering of Cluster Headache Syndrome
It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
This condition often start with intense pain around one eye that lasts up to three hours.
About one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.
What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls 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 comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Historical healing texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in treating the disorder note this.
In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.
National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.
The national guidelines need updating to reflect a
