Full-Blown Suffering: My Struggle With the Mysterious Suffering of Cluster Headaches
It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with severe pain behind one eye that persists for several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others 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 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the failure to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.
Ancient medical texts propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
