Unbearable Pain: A Personal Fight With the Puzzling Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with severe discomfort behind a single eye that persists for several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.
What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Historical medical records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.
In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.
The official guidance need revising to reflect a
