Unbearable Agony: A Personal Battle With the Mysterious Suffering of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain behind a single eye that lasts up to several hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest bizarre treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing happen 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 headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.
Official guidance on management advise that sufferers 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 verapamil, which reportedly soothes the bouts of some individuals.
But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
