Excruciating Pain: My Struggle With the Puzzling Suffering of Cluster Headaches
It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around a single eye that lasts up to several hours.
About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed 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 national hospital.
Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing records propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.
National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.
But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, 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 skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
