Unbearable Pain: A Personal Fight Against the Enigmatic Suffering of Cluster Headaches

It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Multiple 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 pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain around one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father 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 concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, 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 felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a