Excruciating Agony: My Fight Against the Mysterious Pain of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. This was followed by quick shocks, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She especially 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 most severe episodes. “It robs you of the small freedoms 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 portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, scientists released 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 medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur 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 primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a