23 Things To Know About What Migraines Are Really Like

Migraine headaches aren't all the same. Some people have chronic migraines, which is “when a person has 15 or more days of headache per month,” Dr. Jan Brandes, M.D., M.S., A.Q.H., board member of the National Headache Foundation and retired founding director of the Nashville Neuroscience Group, tells Bustle. There are also menstrual migraines, which can happen before, during, or after your period. Some people with migraines experience a visual disturbance called an aura before an attack, while others have ocular migraines, which interfere with vision but don't cause pain.

While the cause of migraine headache is not unknown, per se, it’s not well-known either. “Migraine is a complex neurovascular disorder that can be triggered by various stimuli,” Dr. Chantal Strachan, M.D., an internist specializing in treating headaches and facial pain, tells Bustle. Because of this, each patient must work to identify and manage their specific triggers. “Triggers for migraine can include dehydration, stress, anxiety [and] depression, sleep disturbances, diet, and other environmental factors … Nonetheless, a migraine attack can commence without any known trigger.”

According to the Migraine Research Foundation, 38 million people in the U.S. experience migraines, and 28 million of them are women. “Women are thought to have a higher incidence of migraine due to the normal fluctuation of hormones related to the menstrual cycle,” explains New York City-based neurologist and headache specialist Dr. Thomas Berk, M.D. “For many women, this fluctuation can be a significant trigger for their migraines.”

While menstrual migraines can occur before, during, and after your period, women who have menstrual migraines are also more likely to have migraines during other times of the month. “Estrogen withdrawal is a trigger for women prone to menstrual migraine,” Strachan says — meaning the times when estrogen is naturally lower during your cycle, typically in the late luteal phase a few days before your period starts.

But there can be other factors at play, like dehydration or stress, that can trigger migraines during other times of the month. “This is why there are two International Classification of Headache Disorders (ICHD) diagnoses clarifying this difference: pure menstrual migraine and menstrually-related migraine,” Strachan tells Bustle.

Though the cause is generally not well-understood, “we do know a fair amount about what happens in the brain during migraine,” Berk tells Bustle. “The reason why most people experience migraine is genetics — they've inherited one of over 28 genes associated with having migraines.” However, the cause of each attack can be “extremely variable from person to person and from attack to attack,” Berk notes.

Because many people experience this condition in silence, you might not know just how widespread migraine is. According to the American Migraine Foundation, it’s the sixth most debilitating illness in the world. In fact, migraine is more prevalent than other common disorders like diabetes, epilepsy, and asthma, but it’s the least likely to be diagnosed, Brandes explains.

“Over 50% of people with migraine are either undiagnosed or misdiagnosed,” Strachan notes. “Oftentimes patients may disregard their symptoms because they are not considered to be very severe nor occur frequently.” What’s more is that many patients who do bring their symptoms to their doctor’s attention may be misdiagnosed as having a sinus disease or tension headache, according to Strachan.

If a friend who gets migraines is bothered by your perfume, they're not trying to be difficult. Many people with migraines are extremely sensitive to smells, to the point of becoming nauseous or dizzy when exposed to certain scents. “People living with migraine often report increased sensitivity to sensory stimuli, specifically to lights, sounds, [and] smells,” Aymen tells Bustle. “Such sensory stimuli can trigger migraines.”

Almost anyone who lives with this condition has probably wondered if a migraine is a good reason to miss work. “Several patients I see living with migraine are afraid to miss work when they are suffering a migraine attack,” Aymen says. Patients might be concerned that coworkers won’t believe them or understand the disabling nature of the neurological disorder. “They are also worried about job loss due to absenteeism,” she explains. “Many of these patients will come to work completely disabled by their headache, resulting in loss of productivity.”

If you get migraine headaches, you might not know that you have rights under the Americans With Disabilities Act (ADA). The ADA defines disability as a physical or mental impairment that substantially limits a major life activity. You must have a record of such an impairment (like a doctor's note). Once you show this to your employer, they’re required to take certain steps to protect your health, as outlined in Title 1 of the act: "Employers must provide reasonable accommodations to qualified applicants or employees. A reasonable accommodation is any modification or adjustment to a job or the work environment that will enable an applicant or employee with a disability to participate in the application process or to perform essential job functions."

While everyone’s degree of disability will vary, Aymen tells Bustle that with the right tools and accommodations, “[many] people with migraine can be successful at work.” She encourages people with migraine to talk to their healthcare providers about their options and consider possible accommodations like light filtering equipment or a flexible work schedule.

“There are several reasons that migraine results in economic burden,” Aymen tells Bustle. People will often either miss work or decide to try to push through the pain, which causes them to be (understandably) less efficient at their jobs. “People with migraine often struggle to find an effective treatment regimen, which results in frequent urgent care or emergency department visits,” Aymen says.

“Not very many people annually take one of the certification exams in headache medicine, so the number is well under 1,000 for certified headache specialists,” Brandes tells Bustle. Yes, that’s 1,000 total certified headache specialists in the United States. “When you think about that, it really seems overwhelmingly obvious that that’s not enough physicians to treat the 38 million people [who suffer from migraines].” What’s more is that in some states there are no certified headache specialists, meaning patients have to travel to get care.

Not only are there not many headache specialists, but it can take a long time to get in with a doctor. A 2013 American Academy of Neurology study found that the average new patient waits 35 days to see a neurologist, and the average follow-up patient waits 30 days. Note that this number isn’t even for the limited number of migraine specialists available, but for all doctors who specialize in the brain.

People who live with migraine headaches spend a lot of time identifying and managing their migraine triggers. “I’s very important to try to control triggers,” explains Brandes. Common triggers include sleep deprivation, stress, artificial scents, not eating or fasting, and dehydration — all of which can be minimized to a certain extent. However, Brandes also notes that some triggers are unavoidable, like your menstrual cycle or even sleep deprivation in some cases (such as when you have a new baby).

When it comes to dealing with triggers, stress has a major impact on many migraineurs. So, certain lifestyle changes can certainly help. “One of the roles that exercise can play is in terms of helping with stress management,” Brandes tells Bustle. “Exercise might be doing yoga on a regular basis, regular aerobic activity, and also things like meditation, meditation yoga, mindfulness, those kinds of things can certainly be helpful for managing stress,” she explains.

According to the American Migraine Foundation, 10% of people who get migraines are children. What's more, colic (frequent fussing or crying) in infants may be a sign a baby is having a migraine or will develop migraine later in life. “One thing that investigators at UCSF have found … is that an infant born to a mother with migraine [is] about two and a half times more likely to have colic than a baby born to a mother who does not have migraine,” Brandes tells Bustle. “There’s been this interest in the association between infantile colic and migraine and [whether] it could represent a form of migraine.” More research will be needed to know for sure.

Living with migraine headaches, along with the constant fear of having a migraine, can take a severe toll on your mental health. A 2012 study from the American Academy of Neurology found that migraineurs are 41% more likely to experience depression than those without migraines. “There are a number of things that are co-morbid,” Brandes tells Bustle, “so if you have a diagnosis of migraine, you have an increased risk of also having depression and anxiety.” What’s more is that this link goes both ways. “It’s a co-directional comorbidity because the reverse is [also] true,” Brandes says. “If you have depression, or you start with depression, you have an increased risk of migraine.”

Research published in the journal PLOS ONE found that there is a significant stigma surrounding chronic migraine headaches. Because migraine is an invisible disease, people’s pain is often dismissed by those who have never experienced it. Stages of migraine can “come on hard and fast and can be so miserable in part because of its unpredictability, because of its severity, and because of the disabling nature of it,” Brandes tells Bustle. This migraine-induced disability leads to a stigma that is particularly high for migraineurs who often have to miss work. They may be labeled as lazy when they're actually in extreme pain.

When someone says they have a migraine, they may be offered an OTC pain reliever by a well-meaning person. However, meds only work if they are taken early enough and at the right dose, and according to Brandes, this often does not happen. “[Taking meds correctly is] really important because we know that there’s a peripheral phase of migraine once the migraine starts, and you have about a 20 to 60 minute window when you can [try to] get rid of the migraine,” Brandes tells Bustle. If this window is missed, medications won’t do anything to help your pain.

As if experiencing a migraine weren't bad enough, the recovery stage (postdrome stage) can last for days after the initial pain subsides. Brandes describes this stage of migraine as feelings of exhaustion or fatigue, almost like you’re getting over the flu. “Some people refer to [the postdrome stage] like they’ve been hit by a truck … sometimes people will be sore, sometimes they just can’t get comfortable,” she says. “That postdrome for some patients is just as miserable as the headache phase.”

Migraines and rebound headaches can be a vicious cycle brought on by an overuse of migraine medication. “Most commonly, someone with undertreated or refractory chronic migraine will take an abortive medication frequently to resolve their symptoms,” Strachan explains. The medication will work initially, but overtime loses its efficacy. “The patient takes more medication to attempt to resolve the pain, but it is actually causing them more pain,” Strachan tells Bustle. If you think this is happening to you, see your doctor.

While migraine headaches are rarely a sign of an underlying neurological disorder, they can change the structure of the brain over time. One reason this may happen is because of disruption of blood flow to certain areas of the brain during a migraine attack. “Neurologic changes in the brain during a migraine attack leads to dilation of cerebral blood vessels, [which] then exacerbates head pain and triggers additional activation of nerves,” adds Strachan.

The last thing you probably want to do when it feels like someone is hitting the back of your eye with an ice pick is have sex. However, sex has been found to relieve migraine symptoms for some people — key word: some. “It is not entirely clear how sex can relieve headache pain,” Aymen says. “It is postulated that certain neurotransmitters, such as serotonin, norepinephrine, and dopamine, released during orgasm may play a role. This result may not be the case for every person living with migraine.” But hey, if you’re feeling up for some afternoon delight mid-migraine, it could be worth trying to see if sex helps you feel better faster.