Unbearable Suffering: A Personal Battle Against the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.
The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with intense discomfort around one eye that lasts for three hours.
About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the condition explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. 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 bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
