Excruciating Agony: A Personal Struggle With the Puzzling Pain of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend 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. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a