Full-Blown Suffering: My Fight With the Puzzling Suffering of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort behind a single eye that persists for several hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after 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 portable toilet.
Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Ancient healing records suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.
Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists 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 attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.
But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a