Full-Blown Pain: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. Then came quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense discomfort behind one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that reaches its peak 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, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Historical medical records propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.
But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
