Excruciating Agony: A Personal Battle Against the Puzzling Suffering of Cluster Headaches
It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with severe pain around one eye that persists for several hours.
About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically start with sudden, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.
What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate 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 documented throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder note this.
In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of 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 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.
The official guidelines need revising to reflect a
