Excruciating Pain: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks 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 symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She especially 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 worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks 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 sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment only. Longer or more intense periods require preventives 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 skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a