Excruciating Suffering: My Battle With the Mysterious Pain of Cluster Headaches
It was a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Four 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 pain remained unrelenting.
The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with intense discomfort around one eye that lasts for several hours.
About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “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. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value 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 documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.
In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.
National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need updating to reflect a
