Unbearable Pain: A Personal Battle Against the Puzzling Suffering of Cluster Headache Syndrome

It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers 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, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the findings 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 major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with abortive treatment 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 cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a