Excruciating Agony: A Personal Battle With the Mysterious Pain of Cluster Headaches

It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, severe agony around 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 associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw 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 adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. Longer 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 area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a