Unbearable Agony: My Fight Against the Mysterious Suffering of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain behind one eye that persists up to several hours.
About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated 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 incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical healing texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.
In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosing 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 eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.
National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But consultant neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
