Unbearable Suffering: A Personal Fight Against the Mysterious Pain of Cluster Headaches
It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by rapid shocks, like electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks returned frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically begin with intense pain around one eye that persists up to several hours.
About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What unites patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.
Ancient medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by global medical 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 delivers blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity 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. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.
But leading specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
