Unbearable Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick stabs, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with severe pain around a single eye that lasts up to three hours.
About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% 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 a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.
Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.
The national guidance need revising to reflect a
