Excruciating Suffering: My Battle With the Mysterious Suffering of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe discomfort behind one eye that persists up to several hours.
About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.
It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense 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 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the disorder explain this.
In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, 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 recovered.
Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.
But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
