Unbearable Suffering: A Personal Battle Against the Enigmatic Pain of Cluster Headache Syndrome
It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with severe discomfort behind one eye that persists up to several hours.
About one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient healing texts suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, 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 twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.
National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with abortive therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
