Full-Blown Pain: My Battle With the Enigmatic Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense discomfort around one eye that persists up to several hours.
Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis 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 significant concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, identification 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 four surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.
Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
