“This is giving me a migraine” is a colloquial phrase, used almost jokingly if you encounter something frustrating, difficult or irritating. However, migraines are no joke to those who experience them: They’re far more than simple headaches provoked by minor stressors.
Instead, migraines are “a neurological disorder” characterized by “intense headaches and an enhanced sensory system,” said Wade Cooper, a neurologist and the director of the University of Michigan’s Headache and Neuropathic Pain Program. The condition affects 12 percent of the American population, or 38 million people.
In addition, 1 in 4 households in the U.S. include someone who experiences migraines ― meaning the issue affects far more people than just those who are diagnosed. Yet there are a lot of myths about migraines, and not everyone understands what a migraine is or exactly how to help once an attack strikes.
Here’s what loved ones of migraine sufferers should know about this debilitating condition, according to experts:
1. Migraines are not like milder tension headaches.
According to Cooper, migraines and tension headaches are very different. “[A] tension headache is a mild to moderate squeezing or pressure sensation throughout the forehead, neck, and temples,” he explained. “If a headache is severe, or it has a throbbing sensation along with light and sound sensitivity or nausea, then it is most likely migraine.”
Other symptoms of a migraine include smell sensitivity, pressure or skin sensitivity, and a heightened nervous system. Migraines can also include an “aura” as the attack is coming on, which Cooper described as “a visual or sensory hallucination, where sparkles or spots build and eventually cover half of the visual field.” If headaches, including migraines, occur more than half the month, a person can be diagnosed with chronic migraines.
2. Migraines make people extra sensitive to sensory input.
According to Megan Warner, a migraine sufferer from Guilford, Connecticut, migraines can cause the whole system to feel sensitive. “Being extra sensitive to sound, smell, and light can happen right before or during an attack, and it is miserable,” Warner, 40, said. “It’s like being trapped, because those stimuli are everywhere.”
She said certain smells trigger nausea when she’s having a migraine, like cigarette smoke or synthetic perfumes in cleaners or air fresheners. “My husband’s loud voice, the dishwasher, my kids giggling or chasing each other, all feel like hell,” she said. “It’s like I want to jump out of my skin.” This is why migraine sufferers often desire a cool, quiet, dark room during an attack.
3. Migraine sufferers don’t want to disappoint you and hate that it’s hard to explain the condition.
Jade Seaberry, a 28-year-old from New York, has been suffering from migraines for the past six years and has a team of doctors, including a pain management specialist and several neurologists. She’s also tried multiple medications. However, most people in her day-to-day life don’t know this.
“It’s sad, because when you suffer with a chronic illness that doesn’t show physically, it’s hard for other people to understand,” she explained. “When you are laid up in bed, not able to open the curtains or [turn] on the TV because you can’t stand light or sound, no one is there with you. When you have to cancel dinner plans you’ve had for weeks, because you can’t walk and your head is pounding so badly, some people don’t understand.”
Seaberry said some people in her life have learned to work around her condition and her doctors appointments, and they completely understand when she cancels plans at the last minute. That understanding is a huge relief for people who suffer from this condition, Cooper said.
“If you can validate their symptoms, that’s important,” he explained. “Also, if you can reduce their responsibilities for the day when they have migraines, it’s also very helpful.“
4. Migraines can cause mood changes.
Warner said her migraines can “interfere with everything” and be “internally, very wearing.”
“I feel sadder,” she said. “In the worst of the worst pain, I’ve had urges to be dead or, really, just end the pain ― they really hurt. With 25 years of these, I have learned this is all something neurological that is happening. When I figured that out, I could reclaim so much power. ‘Okay, these feelings I’m having? This is the migraine. This voice of despair? Driven by the migraine.’ I often wish my husband could know this.”
And keep in mind that knowing is different than saying something. Warner added that the last thing she wants to hear when she’s in the throes of a migraine is, “Oh, you’re irritable; it’s just your migraine talking!”
In addition to experiencing strong emotions, strong emotions can trigger attacks, Warner said. “When I am angry or stressed, and my emotions have climbed rapidly, I often get a migraine,” she explained.
5. Sometimes, migraines do not hurt.
Ken Olan, a 58-year-old Houston resident who has had headaches and migraines for 15 years, said his migraines don’t always include crushing headaches. These types of migraines, with auras but without pain, typically occur in people over the age of 50, according to Cooper.
“Migraines can be visual and not painful at all,” Olan said. “For example, part of your field of vision just gets distorted. Some of the worst migraines don’t hurt as much as they make you feel nauseated.”
Warner prefers migraines not be lumped in with other headaches at all. “A migraine is so much more than a headache,” she explained. “Please don’t say, ‘Do you have a headache?’ if you think I am having a migraine.”
For some sufferers, it’s better to leave them in a category all their own.
6. Migraines don’t always mean immobility.
With an intense migraine, many sufferers wind up in that cool, dark, quiet room. However, just because someone is moving around doesn’t mean they aren’t in pain. According to advocate and migraine sufferer Kerrie Smyres, research shows that people who have more migraines each month typically have fewer days of migraine-related impairment. This is likely because those with chronic migraines have learned to push themselves.
“Sometimes business just has to happen,” Olan said. “Even with the migraine. I own a business, and as bad as a migraine can be, sometimes one just needs to suffer through and hide it.”
However, not every migraine is one a sufferer can work through. “Your loved one might experience pain from bright lights or sounds, smells might be bothersome or nauseating, even rubbing their shoulders or touching their arm might be painful or sore,” said Cooper. “Above all, this does not mean they are seeking attention or making it up. The neurological reflex of [a] migraine causes these things to happen. Migraines can be very debilitating.”
7. Being supportive is important.
Beyond validating your loved one with migraines and reducing the tasks on their plate, there’s more you can do to help with symptoms, Cooper said. “You can protect their environment [from] additional sensory input, make sure they keep eating and drinking, and sometimes head or other massages may help ease pain,” he explained. But make sure you ask, since some sufferers are bothered by pressure during an attack.
Last but not least, don’t try to “relate your own headache experience to that of a migraine sufferer’s,” especially during an attack, Cooper said.
“You don’t want to say, ‘Oh, a couple Excedrin worked for me, why can’t you just take that?’” he added. “What they are experiencing is far different [than a headache].”
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