Unbearable Pain: A Personal Battle With the Enigmatic Suffering of Cluster Headaches
It began on a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense discomfort behind one eye that persists up to several hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the failure to organize daily activities around erratic pain took its effect. 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 paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient healing records suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, 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 delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.
National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.
But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.
The national guidance need revising to reflect a
