Unbearable Agony: My Battle Against the Puzzling Suffering of Cluster Headache Syndrome

It was a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. This was followed by rapid shocks, like lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for 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 recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 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 pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a