Excruciating Agony: A Personal Fight Against the Mysterious Suffering of Cluster Headache Syndrome

It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a