Excruciating Suffering: A Personal Battle Against the Enigmatic Suffering of Cluster Headache Syndrome

It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, 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 freedoms we don't appreciate 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 documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

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

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a