Unbearable Agony: My Battle With the Enigmatic Suffering of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense pain around a single eye that lasts up to several hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, 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 eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the failure to plan 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 cared for by her children during the incapacitation caused by the worst episodes. “It robs 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 attack inside a facility.
Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Historical medical records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
