Unbearable Pain: My Fight With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. It was followed by rapid stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense discomfort behind one eye that lasts for several hours.
About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around unpredictable 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 looked after by her family 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 recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.
Historical healing records suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.
In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms 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 eventually being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the attack passed.
Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
