Excruciating Pain: A Personal Battle With the Mysterious Suffering of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most 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 misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a