Full-Blown Suffering: My Fight With the Mysterious Pain of Cluster Headaches
It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
This condition often begin with severe discomfort behind a single eye that persists up to three hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation 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 major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.
Historical medical records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.
It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.
Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
