Excruciating Pain: My Battle Against the Mysterious Pain of Cluster Headaches
It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind one eye that lasts for several hours.
About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.
Ancient healing records propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the disorder note this.
In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his symptoms.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.
National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
