People dealing with physical pain, stigma of condition
For the longest time, Lisa Benson didn’t know she suffered from migraines because she didn’t know much about the condition. She figured everyone had headaches, and even her primary care doctor didn’t see a problem.
“But unless they’re really trained to know which signs lead to migraines, because the migraines are so varied and come in so many different forms, they’re often undiagnosed or misdiagnosed,” said Benson, a patient advocate and writer for Migraine.com, run by consultants Health Union in Philadelphia.
And that’s a problem, especially for the workplace — nearly three-quarters of people diagnosed with migraines say their education or career has been affected by the condition, according to a recent survey.
One-quarter (26 per cent) said they required employment accommodations, reduced work hours (23 per cent) or used medical leave (22 per cent) due to migraines.
Eighteen per cent said they had voluntarily stopped working due to migraines, with 15 per cent indicating they had lost a job, according to the Health Union survey of more than 4,500 participants in the United States.
Additionally, respondents indicated they had cut back on participating in hobbies or other activities due to migraines, and they felt their family, friends or colleagues did not understand their condition.
“The biggest thing to keep in mind is that people with migraines, they want to be able to work, they want to be able to participate in activities with family and friends and co-workers, and they want to be there for their kids,” said Benson.
Symptoms, diagnosis and stigma
Migraine attack symptoms typically experienced by respondents included head pain (91 per cent), sensitivity to light (87 per cent), sensitivity to sound (80 per cent) and difficulty concentrating (73 per cent), found the survey. Nine out of 10 respondents (92 per cent) said they experienced some form of “cognitive anxiety,” meaning their ability to think can become impaired, leading to confusion, memory loss or an inability to focus due to pain and other symptoms.
Migraines have been determined as a neurological disease, and while the primary symptom is a headache, there are many other possibilities, according to Benson.
These can include a stiff neck, aura, hallucinations, trouble speaking, nausea, vomiting, confusion, dizziness and fatigue. That could last for hours or days, and once that’s over, there’s a migraine “hangover” that can involve fatigue, a minor headache or trouble concentrating.
People often talk about “triggers” when it comes to migraines, but there’s a huge distinction between a trigger and a cause, she said.
“A cause is something like genetics or a past history of concussion that could even bring on the disease in some people, whereas a trigger is something like maybe you eat some kind of food and that triggers a migraine for you.”
Triggers can run the gamut from a smell, a change in sleep schedule or travelling, she said, and it’s often difficult for people to identify them.
“Trigger” is a bit too strong of a word, according to Deon Louw, a neurosurgeon at Caleo Health in Calgary, who prefers to call them intensifiers.
“One of these focal intensifiers could convert a mild attack to a severe one… or push you over the edge when you have an undecided migraine that’s sort of hesitant — it’s kind of incubating,” he said.
There are about 38 million people in the U.S. with migraines, and just 500 or 600 headache specialists, according to Amrita Bhowmick, chief community officer at Health Union.
“When you think about it as a field, it really isn’t quite as developed from an academic standpoint as some other fields are, and that has led to a gap in research and knowledge,” she said. “Migraine still remains a diagnosis of exclusion, which is always much more challenging from a physician’s standpoint. You really have to be able to rule out many other things before you can know for sure it is migraine.”
Migraines are still underdiagnosed, partly because the education of GPs on them is severely deficient, said Elizabeth Leroux, clinical associate professor of neurology at the University of Calgary.
“To be honest, some cases are not diagnosed because they are not frequent or severe enough to seek medical attention, or because they look like tension type headaches. Others are confounded with something else,” she said, such as sinus headaches or neck headaches.
Chronic migraines have been defined more recently, in the last 10 to 15 years, and are still severely underdiagnosed, she said.
“This is a bigger issue because this is a significantly disabling disease.”
In looking at the number of people misdiagnosed or under-diagnosed, it’s like an iceberg, with only the tip representing those diagnosed, said Louw.
“Many family doctors associate migraines with women but one in 16 men get migraines as opposed to approximately one in five for women.”
And the criteria used to classify headaches and migraines can be quite complicated for the average physician, he said.
“The various symptoms associated with migraine, they’re not all of equal importance, and so the family doctor may be focusing on symptoms that don’t have high odds ratios or a positive predictive value.”
The actual cause of migraines is still considered unknown, which of course impacts our ability to treat them, said Bhowmick. And most triggers are very difficult to avoid because they’re environmental or ever-changing. People with migraines often say “My life is my trigger,” she said, as coffee might be fine one day, and not the next, for example.
“The general public thinks, ‘Why don’t people just avoid that trigger?’ and it’s simply not that easy.”
Research has shown almost 70 per cent of people feel others don’t understand their migraine is not just a headache, while two-thirds worry about disappointing people, and about half are embarrassed they have migraines, said Bhowmick.
“It’s huge, the impact of stigma, because if you’re hiding it and you’re worried about how it’s affecting your relationships and how people perceive you, then chances are you’re not able to manage it effectively as well.”
The stigma around migraines is huge, said Leroux. “I see a lot of shame and guilt in my patients.”
Many migraineurs just “push through” at work, she said.
“They know they are perceived as whiners but in my practice I see a lot of extremely courageous people who do everything they can not to miss work.”
Workers who might ask for lights to be dimmed or for co-workers to be quiet might seem like picky individuals, said Benson.
“It can be hard to know how to advocate for yourself but not seem like you’re just complaining,” she said, adding a migraine is largely an invisible illness, which can further the stigma.
Treatment options, workplace supports
When it comes medical treatment, more than two-thirds (67 per cent) of respondents said abortive or acute prescription migraine medications are the most commonly used, followed by over-the-counter pain medications (50 per cent), preventive medications (49 per cent), and rescue medications (47 per cent). But side effects play a key role in people’s avoidance or stopping use of a medication, according to Health Union.
There are a lot of different options but none of them can take care of the problem 100 per cent, said Benson. “We really just need to understand better what migraines are so that new treatments can be more targeted.”
There’s a perception that there are many treatment options, but few of them were developed to treat migraines, said Bhowmick.
“It’s really just a cobbled together approach at this point in time, and either the side effects are unbearable and it’s not something a patient is going to endure, or they just don’t work… and what’s more frustrating is they might work and then it might stop working,” she said.
“It is constant trial and error.”
Migraines can affect a person’s attendance, be they episodic or chronic, said Benson. There are days when people can function OK, and days they cannot because it’s not safe to drive, they’re throwing up or the pain is too severe.
“Being able to be a reliable co-worker or employee or boss can be really difficult,” she said.
When it comes to making the workplace more supportive or accommodating, there are sensory options, such as a no-perfume policy, or allowing for a quiet space, said Benson.
“Sometimes, if a person can treat their attack either medically or naturally and have a space to lie down and take a quick nap, that can mean you can function the rest of day versus trying to power through it.”
It’s also good to try and use tools that don’t affect other people in the room, such as special glasses for fluorescent lights or earplugs, she said.
“Not eating on time can be a trigger, so another accommodation is just (about) making sure the employee has adequate breaks to even just have a quick snack if they need to.”
Ergonomically, comfortable chairs can help too, as can a sit-stand desk, said Bhowmick.
“Sound, light and smell are the three most common we hear about in the workplace, and they’re things that people without migraine probably don’t think twice about… they’re also very difficult to change depending on the employer — that’s a challenge.”
People who have to work shifts also talk about the disruption in the hypothalamus, the “irritable” part of the brain that helps mobilize the headache phenomenon that’s also involved in sleep, “so even sleep deprivation is an issue,” said Louw.
“They’re complaining about scents not being aggressively enforced necessarily at the workforce, the ergonomics — if you have neck pain, this can be one of those intensifiers for migraines, so if you don’t have good ergonomics at work, like hands-free headsets and the ability to stretch and move and exercise gently, this could certainly be an issue for workers.”
IT can also help, by providing a filter that goes over a computer screen or changing black type on a white screen to white type on a black screen to reduce glare, he said.
“It’s very individual. Some people say they hate it… other people said it’s fantastic, so one of the big challenges for the patient and the employer and the doctor is every migraine brain is different, unfortunately, so we’re probing and testing and half the time things don’t really work, and then we just keep trying something else.”
It’s also reasonable to talk about dimming or eliminating overhead flickering fluorescent light or having a lamp on the desk that workers can modulate, “just to give that sense of control back to the patient or the worker,” said Louw.
Trying to reduce gratuitous noise is also helpful, such as replacing an overhead paging system with personal pagers, he said.
“Acoustic pollution is a horrendous source of stress and aggravation and headaches. So definitely things like that can be done.”
