Excruciating Pain: A Personal Struggle With the Puzzling Pain of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition often start with intense discomfort behind one eye that lasts up to three hours.
About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the absence of long pain-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.
Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in treating the disorder note this.
In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
