Unbearable Pain: My Struggle Against the Puzzling Suffering of Cluster Headaches
It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. Then came rapid shocks, similar to electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense discomfort around a single eye that lasts up to several hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes 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 seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.
Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, 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 steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
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 attributed the disease to an malevolent entity who afflicted his victims' heads.
Historical healing records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.
It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.
But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidelines need updating to reflect a
