Unbearable Suffering: My Battle With the Puzzling Pain of Cluster Headaches

It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding 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 took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, 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 robs you of the simple 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 portable toilet.

Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical medical texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a