Full-Blown Pain: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind a single eye that lasts for several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky 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 simple freedoms 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 facility.
Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.
Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.
National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
