Full-Blown Agony: My Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with intense pain behind one eye that persists up to three hours.
About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives 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 found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to organize daily activities around erratic attacks took its effect. She especially 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 worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical medical texts suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally classified by international medical societies 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 supplies blood to the brain. Prominent specialists in treating the disorder note this.
In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.
National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
