From the outside, migraines can be somewhat of a mystery. You know the pain can be unbearable and debilitating, but it's hard to understand how people who get migraines really feel. And if you've ever had one of these painful headaches, you can tell people just how excruciating they can be—physically. But it's hard to communicate the psychological challenges that go along with a condition that can strike with or without warning.
So what do people really wish migraine-free people knew? We asked five women with frequent migraines, and Mia Minen, MD, a neurologist and director of headache services at NYU Langone Medical Center, in New York City, to give us the real deal on these mother-headaches.
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It's not "just a headache"
This was No. 1 on the list that we heard from people who get migraines. While most people have had a headache at some point, not everyone has had a migraine. “I’m actually happy when I get ‘just a headache,’” says Kerilyn Whitehead, who has been dealing with migraines for 13 years.
Migraine-associated head pain is severe, can be on one or both sides of the head, and is usually characterized by an intense throbbing. Nausea, vomiting, extreme light and sound sensitivity, blurred vision, and more can also accompany them. “My worst migraines come with light and sound sensitivity, where I can’t have my eyes open because it will hurt, and talking takes a huge amount of effort,” says Jessica Feighan, who has had migraines for 18 years.
In fact, there is a metric that doctors use to measure just how much migraines impact a person’s life, says Dr. Minen. The Migraine Disability Assessment Test (MIDAS) takes into account the number of days missed from work or school, the loss of time with family, friends or at social events, and the inability to do household chores and other daily tasks.
Headaches, on the other hand, have fewer symptoms, are easier to treat, and subside more quickly. Tension-type headaches are the most common type, and are caused by tightness in the muscles in the face, neck, and shoulders, usually as a result of stress, anxiety, or depression. (Here are 5 Types of Headaches and what to do about them).
Most non-migraine headaches respond to lifestyle changes and over-the-counter medications.
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There's more than one kind of migraine
There are two major types of migraine: migraine with aura and migraine without aura. An aura is a visual or other neurological disturbance that occurs within an hour of an attack (think flashing lights, spots, or lines), although sometimes people can have the aura without a migraine. Other harbingers can include loss of vision, difficulty speaking, numbness, or muscle weakness. These can also be signs of stroke so check with your doctor if you ever have these symptoms.
Other types of migraine include chronic or menstrual migraines. If you have migraines 15 days out of the month, for three months or more, you are considered to have chronic migraine. Women with menstrual migraines have hormone-triggered head pain during or just before their monthly period.
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Lifestyle factors can trigger migraines
While it’s difficult to avoid all migraine triggers, it’s important for people to try to keep their schedules as consistent as possible, says Dr. Minen.
Changes in wake-sleep patterns and stress levels can be a trigger. As can sensory stimuli such as bright lights, loud sounds, strong smells, or changes in the weather or barometric pressure, she says. Missing a meal or fasting can also result in a migraine.
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Foods can also trigger them
Unfortunately, certain foods can trigger a migraine attack too. Although it's not true for everyone, many people say alcohol, chocolate, processed foods, and food additives such as artificial sweeteners and monosodium glutamate (MSG) are a problem.
Specific food triggers can be difficult to identify, which is why doctors stress the importance of keeping a headache diary. People who are aware of their triggers may find it difficult to eat out at restaurants or attend social events where it might be difficult to stick to their diet. “I always monitor food and caffeine intake,” says Lehigh Garrick who has had migraines for 10 years. “I make sure I keep caffeine consistent and eat full meals.”
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You can do everything "right" and still get migraines
Even people who make lifestyle changes, take preventative and emergency medication, and avoid their triggers can still struggle with migraines.
“Although myself and my doctors have done a better job of trying to prevent my migraines, you never know when a migraine could come on,” says Stephanie Petrello, who has been has had chronic migraines for 10 years. Preventive measure can help reduce the frequency of attacks and make symptoms more manageable, but it’s not a perfect science.
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Migraines can go hand-in-hand with psychological issues
“Oftentimes, patients of migraines can be concerned that they’re going to get a migraine attack," says Dr. Minen. "And this can cause anxiety because patients are so aware of how disabling it can be.”
Another common problem is depression, she says.
Treatments that can be effective in treating anxiety and depression, such as cognitive behavioral therapy, can be used to help treat migraines as well.
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Physical activity doesn't necessarily make it better
Exercise may help ease the pain of some types of headaches because it relieves tension and can boost pain-relieving endorphins. But that's not true for people experiencing a migraine. The nausea alone can make rapid movement impossible, and sensory stimuli (sunlight, loud noises at gyms, a smelly neighbor) can be unbearable. Most often, the only way to deal with an attack is to retreat to a dark, cool room that is as quiet as possible.
As a preventive measure, though, regular exercise and a healthy diet may be lifestyle factors that may help reduce the risk of attacks overall.
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There are four main phases to a migraine
A migraine attack can have four stages—prodrome, which occurs about a day before an attack with symptoms such as food cravings, mood changes, or frequent urination; aura, the visual, sensory, or speech disruptions that can happen within an hour of an attack; headache, which are symptoms such as head pain and nausea; and postdrome, which is extreme fatigue and grogginess that can linger after the pain has receded. Some people refer to the last stage as a “migraine hangover, "and it can take a day or more to feel normal again.
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Migraines can be mentally exhausting
The four migraine stages can wreak havoc on a person's mental and physical wellbeing. Auras can be scary on their own, but the stress is amplified by the fact that they signal an impending attack. And even after the headache is over, it's not really over. The physical pain of the attack segues into the postdrome symptoms of fatigue and grogginess.
“Sometimes I feel exhausted because the pain is so intense,” says Feighan. “And sometimes I have a hard time concentrating or focusing.”
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People with migraines can look perfectly healthy
Migraines affect 12% of the U.S. population, and are three times more common in women than men. Migraines are highly disruptive, affecting people mentally and physically, as well as socially and professionally.
There is a lot of stigma attached to migraine, and many people feel misunderstood because it seems “invisible” to others. “A lot of the public doesn’t understand that migraine is a debilitating condition, it’s not just a headache,” says Dr. Minen.
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They can affect your ability to work or go to school
It can be frustrating when people don't understand why a person with a migraine has to leave work or school to deal with an attack. “There were times that I would have to skip class or call out of my job,” says Janine Weiburg, who has had migraines for almost 10 years. “It is hard to explain to your professor or boss that it is more than just a headache.” Weiburg also finds that she has difficulty focusing during a migraine, which then affects her performance and projects.
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Social events—even important ones—can be interrupted
One reason people with migraine might be more prone to anxiety and depression? Migraines can make it impossible to attend (or stay at) life events, even important ones.
Feighan has missed dozens of events due to her migraines, from weddings to family get-togethers. "I’ve had to leave places early or abruptly,” she says. “In all of those instances and in many more, I’ve found myself curled up into a ball in the front seat of a car, or laying across the back seat, with my hands over my eyes, trying to sleep off the pain.”
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Even simple tasks can be impossible
If the only relief comes in the form of a dark, quiet room, it can be difficult to find a safe place as quickly as you need it. Sometimes, people have to deal with their migraines and go about their day until they can find relief. “There were times I couldn’t even drive home because the street lights and headlights of other cars would blind me when I had a migraine,” says Weiburg.