Full-Blown Suffering: My Struggle With the Enigmatic Suffering of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my one eye. Then came rapid stabs, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with intense discomfort around a single eye that persists for three hours.
Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the inability to organize daily activities around unpredictable attacks took its toll. 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 most severe 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 episode inside a portable toilet.
Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the condition note this.
In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
