Excruciating Pain: My Battle With the Mysterious Pain of Cluster Headaches
It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick shocks, like lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense discomfort around a single eye that persists up to three hours.
About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to plan life around erratic attacks took its toll. She especially hated 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.
Ancient healing texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in treating the condition note this.
In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.
The national guidance need revising to reflect a
