Excruciating Agony: My Struggle Against the Puzzling Pain of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain bloomed behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with intense discomfort behind one eye that persists for several hours.
About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, 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 robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing records propose unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in diagnosing the condition note this.
In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a