Full-Blown Pain: My Battle Against the Puzzling Suffering of Cluster Headaches

It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate 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 diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for 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 winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists 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 results, published in a prominent medical publication, showed increased activity 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 slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a