Unbearable Pain: My Battle With the Mysterious Suffering of Cluster Headache Syndrome

It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by rapid shocks, like lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor 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 disappearing each day at specific hours”.

Cluster headaches were only officially classified by international 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 head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 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 correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a