Unbearable Suffering: My Battle With the Puzzling Pain of Cluster Headaches
It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense pain behind a single eye that persists up to several hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began 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 deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky 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 attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties 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 documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical healing records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent specialists in treating the condition explain this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.
But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. 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 guidelines need revising to reflect a
