Unbearable Pain: My Battle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.
The attacks appeared repeatedly 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 commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense discomfort around a single eye that lasts for several hours.
Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.
What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.
But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a
