Excruciating Suffering: My Fight Against the Puzzling Suffering of Cluster Headaches

It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken 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 clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition 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 teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a