Excruciating Suffering: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by rapid jolts, like 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 teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In 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 around a single eye that lasts for several hours.
About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain around a single 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 tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the initial comprehensive 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”.
The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in treating the condition explain this.
In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
