Excruciating Suffering: My Battle With the Enigmatic Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.
The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort behind a single eye that lasts for three hours.
About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Ancient healing records propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.
In 1998, researchers 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 results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
