🔗 Share this article

It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. It was followed by rapid stabs, like electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many 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 official guidelines need updating to reflect a