Unbearable Pain: My Battle With the Puzzling Suffering of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain behind one eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “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 teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by international headache 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 supplies blood to the brain. Prominent specialists in treating the disorder explain this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent 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 reduction when they felt better.
In spite of such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for the majority 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 dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.
National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.
But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
