Excruciating Suffering: A Personal Battle Against the Puzzling Suffering of Cluster Headaches

It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic pain 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 family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a