Excruciating Pain: My Fight With the Mysterious Suffering of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches returned frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense pain around one eye that lasts for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
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 children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.
Historical healing records propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, researchers 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, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of 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 guidance need updating to reflect a
