Full-Blown Pain: My Struggle With the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind one eye that lasts for several hours.
About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as drunken 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 office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Ancient healing texts propose unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
