Full-Blown Suffering: My Struggle Against the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with severe discomfort behind a single eye that lasts up to several hours.
About one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate 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 absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to organize life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. 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 account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in treating the condition explain this.
In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing 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? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
