What I Wish I Knew Before My Migraine Diagnosis

More than 100 people responded to the question, “What’s one thing you wish you knew before migraine?” Their answers can help to empower and educate members of the migraine community.

A migraine diagnosis can leave you feeling like you have more questions than answers. Though you now understand what’s behind the symptoms you’ve been experiencing, you may begin to wonder what comes next. What causes my attacks? What can I do to get better? Will I always have migraine?

We asked the Move Against Migraine (MAM) Facebook support group, “What’s one thing you wish you knew before migraine?” Responses came flooding back, with more than 100  community members expressing how their life has been changed by migraine, plus the ways they wish they could’ve been better prepared to manage this disease. Many of the responses related to one another, showing how common shared experiences can be in the migraine community.

Whether you are someone learning to live with migraine or someone trying to support a loved one with migraine, MAM’s reflections offer knowledge, solidarity and hope. Here’s what MAM expressed:

It’s Not Just a Headache

Stigma and a lack of understanding surrounding migraine create a popular misconception that migraine is “just a headache.” As everyone with migraine knows, that is far from the truth.

MAM member Denise explained that migraine is “a neurological condition, and that headaches are only one of many possible symptoms, which can drastically lower your quality of life. And that that change could be chronic or permanent.”

Migraine is so much more than a headache. People with migraine can experience a range of symptoms, such as nausea, dizziness and sensitivity to light or sound. Migraine also makes it difficult to get things done. It can affect your attention and concentration and make simple tasks very difficult.  Migraine attacks can vary in how often they occur. The chronic form has 15 or more per month. The frequency of attacks can severely affect a person’s life.

MAM member Kathy pointed out this frustration in her response: “You hate the way they cause you to have to cancel appointments, miss events, socialize and miss chunks of life.” Migraine can make it challenging to spend time with friends, focus at work or school or maintain daily routines such as cooking and cleaning. The constant disruption caused by migraine attacks can be lonely, frustrating and disappointing. Over time, these experiences can negatively affect a person’s mental health.

“Depression, anxiety and even PTSD come with chronic pain. It’s a misunderstood, often invisible, debilitating illness,” MAM member Paula shared. If you have struggled with your mental health due to migraine, you’re not alone. There are resources that can help. This article discusses the relationship between depression, anxiety and migraine and offers insight on treatment and management.

Seek Help Early and Advocate for Yourself

Many responders wished they knew what migraine truly was before receiving their diagnosis. But they also reported wishing they had more information on how to treat migraine in its early stages. Several members shared the painful realization that receiving medical attention for their condition sooner could have prevented things from worsening. If you suspect that you could be experiencing migraine, it’s important to see a doctor. As MAM member Gina wrote, “ignoring or getting inadequate treatment for the episodic migraines can lead to chronic migraines down the road.”

Early intervention in the management of migraine is key. This goes for preventing episodic migraine from becoming chronic, as well as for treating a migraine attack.Take the [acute medication] as soon as you feel the migraine coming, because it won’t go away on its own. Migraine pain is real, and I’m not being dramatic or a sissy to feel the pain that I feel. Migraine is awful and can be debilitating,” said MAM member Emily. 

Acute treatments for migraine can help greatly shorten or reduce the intensity of a migraine attack, and may help a person resume their day. The sooner they’re taken, the quicker they can begin to work. Even as the number of treatment methods available for migraine increase, it may take time to find the right treatment for you. Finding the right doctor is part of that process, too.

MAM member Bridget shared that she wished she knew that “there were specialists who were passionate and legitimately interested in helping people gain control over their migraine.” If you have migraine, it’s important to advocate for yourself and your health. Find a doctor in your area, and learn how to develop and maintain a good relationship with them. Don’t be afraid to ask for help when you need it, and speak up if something in your treatment plan isn’t working.

Migraine Is Different for Everyone

No two people experience migraine the exact same way. People can have different triggers for migraine attacks and experience different symptoms. Additionally, how effective treatment methods are can vary greatly from person to person. So what works wonders on one person may not have an effect on another. Managing migraine involves assessing every area of a person’s life to find triggers. They must also adjust routines to reduce migraine attacks. Not every person has identifiable triggers, but it is worth looking for them.

For MAM member Victoria, the important aspects of her journey with migraine were getting the right practitioner who listens to you; doing research on the possible treatments, diet, exercise, meditation and attitude; along with trying many different medications until the right combination is found—and not giving up.” Looking at all areas of your life can take time, but it’s worth it to find your unique triggers and treatment methods. 

Managing migraine takes patience. MAM member Lexi shared that she wishes she knew “to really give treatments a try and be patient, to give it time to see if it is helping,” she said. “It can be frustrating to wait a month or two on a treatment that doesn’t ‘cure’ you. But just because it didn’t take your migraine away completely doesn’t mean it’s not a good treatment that could improve your quality of life.

Finding a treatment method that works for you may not happen overnight. It’s important to remember that migraine attacks can occur even when you’re following your treatment plan to a T. There will be good days and bad days. In MAM Member Clare’s words, “It is not a linear journey! Every minute, hour, day, week, month is different.”

You Can’t Understand Migraine Unless You Have It

It’s almost impossible to explain migraine to someone who doesn’t have it. Due to this gap in understanding, many people may unintentionally downplay the experience of migraine, thinking it’s “just a headache.” MAM member Cathy relatably expressed, “I don’t want sympathy; I just wish that people that don’t suffer from disabilities could for one day walk in our shoes so they could understand a little better and judge a little less.” 

If you are someone who has migraine, learning tips on how to explain migraine to others can help you facilitate difficult conversations and bridge this gap in understanding. If you know someone who has migraine, read up on ways to support them as well as how to advocate for the migraine community. Through listening to the experiences and needs of those with migraine, and by standing up on their behalf, we can make the world a more manageable place for them as we continue to find successful treatment options.

It’s Not Your Fault and You’re Not Alone

Sentiments that were repeatedly shared in the MAM Facebook group were that migraine is not anyone’s fault. No one is alone in their experience with migraine. MAM member Michaela shared that she wished she knew “that [migraine is] a real illness, not somehow me doing something wrong.”

It can be easy to question if something you did caused you to have a migraine attack. But the reality is that migraine attacks can occur even when you’re following your treatment plan perfectly. A lot of migraine attacks are spontaneous. That means for many attacks, there was nothing you could have done to change the outcome. Those days require patience, self-care and the reminder that it will pass.

Just as importantly, remember that you are not alone. Thirty-nine million Americans live with migraine, and the American Migraine Foundation (AMF) has a growing community of 28,000 people who regularly share their stories and tips online for managing migraine. MAM member Kathy shared, “I am not alone; way too many suffer with [migraine]—it is a debilitating event, and no one can endure them without support.”

It is so important to build a support network that can help you through hard days with migraine. Start by communicating to your loved ones how you’d like them to help you. That can be by helping you with daily tasks, respecting your need for silence or by sending you encouraging messages. If you’re looking to connect with others who understand migraine or if you wish to advocate for the migraine community, seek out migraine advocacy resources.

As we continue to learn about migraine, there will always be something we wish we knew sooner. We hope that the experiences shared in the MAM Facebook group will help a new member of the migraine community better understand how to navigate their condition, and to be reminded that there are people who understand what they’re going through. 

The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For more on advocacy and ways that you can get involved, please visit our Advocacy Hub.