Full-Blown Suffering: My Fight With the Mysterious Suffering of Cluster Headaches

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks 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 face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the guidance need updating 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 bout determines the treatment.” Short bouts with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a