Excruciating Agony: My Struggle With the Enigmatic Pain of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe discomfort behind a single eye that lasts up to three hours.
Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
