Unbearable Agony: A Personal Battle Against 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 class, when a intense pain sprang behind my one eye. Then came quick stabs, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort around one eye that lasts for three hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony around a single 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 red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Ancient healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.
In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
