Unbearable Pain: My Battle With the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense pain behind a single eye that lasts for several hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Nevertheless, the inability to plan life around unpredictable 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical medical texts suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European physician 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 occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks began 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 surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.
But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
