Unbearable Suffering: A Personal Struggle Against the Mysterious Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. Then came quick shocks, like electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.
The attacks returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically start with severe pain around a single eye that persists up to several hours.
About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.
Ancient healing texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.
The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition explain this.
In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced cluster headaches 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 the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.
National guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.
The national guidance need revising to reflect a
