Unbearable Agony: A Personal Struggle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. Then came quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense pain behind a single eye that persists for three hours.
About one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to 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 periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid 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 hospital.
Nevertheless, the failure to plan life around erratic pain took its effect. 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 steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical medical texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in diagnosing the condition note this.
In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.
Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
