It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind one eye that persists for three hours.
Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long 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 dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability 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 simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Historical medical texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s 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 diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.
But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.
The national guidance need revising to reflect a
