Full-Blown Pain: A Personal Fight With the Mysterious Suffering of Cluster Headaches
It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with severe discomfort behind one eye that persists for three hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.
Still, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from 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 portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical healing texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the condition note this.
In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.
Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.
Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
