Unbearable Pain: My Battle With the Puzzling Pain of Cluster Headache Syndrome

It began on a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out 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 occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession 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 bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered 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 people.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a