Unbearable Suffering: My Battle Against the Mysterious Suffering of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind a single eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic pain took its effect. She particularly 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 incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a