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The Diversity of Migraine: No Two People Experience the Condition the Same

Real Talk

November 15, 2022

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Photography by Maskot/Stocksy United

Photography by Maskot/Stocksy United

by India Kushner

•••••

Susan W. Lee, DO

Medically Reviewed

•••••

•••••

by India Kushner

•••••

Susan W. Lee, DO

Medically Reviewed

•••••

•••••

Migraine triggers and symptoms vary significantly from person to person. Migraine treatments that work for one person may not work for the next.

The year I turned 11 was the year I got my first period and the year my migraine attacks started.

I remember spending hours lying in a dark room with a cold cloth over my forehead. A usually sharp, but sometimes dull, pain would fill my head. Nausea would fight its way through my throat. At times, the nausea was so strong it was almost painful.

I would feel almost feverish. One minute I’d feel chilled to the bone, the next minute I’d need to pull off all the blankets.

Since then, my hormone migraine episodes have, thankfully, disappeared. I still deal with migraine attacks but my triggers are different.

For people who don’t have migraine, it might seem like the attacks are just a “bad headache” but migraine is so much more than that. It’s a neurological condition that can cause symptoms like the ones I experience or even numbness, vision changes, and trouble speaking.

These days, as a 32-year-old, I have made lifestyle changes that help me manage my attacks. I’ve learned, for example, the consequences of late nights, and I now make sure to maintain a good sleep schedule. Getting enough sleep helps me avoid waking up feeling like someone stabbed a knife through the top of my head.

Other triggers I experience include prolonged exposure to the sun, dehydration, seasonal changes, or eating food with too much salt. It can be frustrating to feel like I am always on alert, trying to avoid an attack, but it’s also a reminder to check in with my body and make sure I’m getting what I need.

Migraine can feel isolating but you are far from alone. Migraine affects at least 39 million people in the United States but since many don’t seek out a diagnosis, that number is probably much higher.

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Having a community helps

I count myself lucky to have friends who also experience migraine attacks. We understand, empathize, and support each other.

When talking about migraine with my good friend, Kristi, we discovered a lot of similarities in our symptoms. Like me, Kristi’s head pain started young, when she was in high school. She remembers having splitting headaches in her forehead, directly above her eyes.

When she moved to California, her partner, Jesse (who had already been diagnosed with chronic migraine) suggested that her headaches may actually be migraine attacks.

Kristi’s triggers include seasonal changes or allergies. When she vacuums, she has to wear a mask so the dust won’t bother her. Like me, her migraine episodes start out slow, with a dull headache. The pain appears behind her temples and she sometimes feels nauseous.

We both deal with gastrointestinal problems during a migraine attack and have to keep our eyes closed. Unlike me, however, once her migraine has passed, Kristi often has a burst of energy, especially if she’s feeling better by the evening.

She also occasionally suffers from ice pick headaches. These show up as a sharp pain on the side of her head and last only a few seconds.

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The physical symptoms

Aside from headaches and nausea, there’s also the brain fog that comes with migraine.

Lindsay Weitzel, podcast host for the National Headache Foundation and founder of the nonprofit Migraine Nation, first began having chronic migraine episodes at only 4 years old. She continued to have attacks daily until she was 30.

Lindsay recognizes an attack is starting when she feels the brain fog coming on. She says, “It’s usually the first sign for me that things aren’t going to go well.”

Then there’s the postdrome (or migraine hangover) that comes after the attack. Lindsay often continues to experience brain fog, as well as fatigue and body aches.

The social, emotional, and mental impacts

Lindsay used to be a clinical researcher at the University of Colorado. She believes that people with chronic pain, and especially migraine are misunderstood.

She never told anyone at her job that she had chronic migraine until she started a new treatment and needed to take time off of work.

Migraine symptoms extend far beyond the physical impacts.

During a migraine attack, Lindsay says that the thoughts she has can affect her pain level.

“Almost everyone I know has had the thought, ‘I’m going to die,'” she shared. “There’s no way around it. There’s always the thought that you feel like you’re dying because the pain is so bad.”

In the middle of an attack, when she has this thought, she tries to stop it by distracting herself.

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The unique nature of migraine attacks

For me, it wasn’t until I was in college that I realized migraine can show up differently in different peoples’ bodies. I remember learning about migraine with aura, a visual disturbance where flashes or zigzags can appear in your vision.

There are many different kinds of migraine, each varied, depending on the type of attack. Migraine is often unique to each person, so the symptoms can vary. Types can include hemiplegic migraine, abdominal migraine, retinal migraine, and brainstem aura (also called basilar artery migraine).

Kristi’s partner, Jesse, gets auras. It begins with spots in his vision and tunnel vision, where he temporarily loses part of his ability to see. About 30 minutes later, he gets a headache that gradually worsens. Eventually, he also becomes nauseous and develops sensitivity to light and noise, forcing him to retreat to his bedroom and turn the lights off.

Migraine stigma

One of the worst parts of chronic pain is that it can be isolating and cause you to miss social events. Bringing attention to migraine can be stressful too, thanks to stigma around the condition. Migraine is often misunderstood or misdiagnosed. Barriers include lacking access to care or having symptoms minimized, especially for people of color.

I’ve also encountered negative comments from others about migraine. Sometimes people assume I’m just suffering from a bad headache or they are disappointed when I have to cancel plans.

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Migraine treatment needs to be individualized

Dr. Thomas Berk is the medical director of Neura Health a telehealth-based comprehensive headache center, that treats patients across the country. According to Berk, there are dozens of migraine attack types. They can vary based on frequency, whether they are chronic or episodic, type, duration, and symptoms.

“We are still learning more about why migraine manifests differently among different patients. Genetic variations are thought to play the most important role in this,” he says.

To help identify the type of migraine you are experiencing, Berk suggests tracking your symptoms by using an app or headache calendar (MigraineBuddy is useful). This may help identify patterns and help recognize triggers.

“It’s best to take an individualized approach to prevention. Step one is always getting the diagnosis right. Then you can try to find the best options to treat that specific condition.”

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About the author

India Kushner

India R. Kushner is a writing and marketing consultant with a bachelor’s degree in communications, with a concentration in journalism from Goucher College.

Through her work, she has come to appreciate the power of language to uplift unheard voices across diverse platforms. Her writing has been featured on The Tempest and GoodRx. Her poetry has been published in the Corvus Review and she is a former writer-in-residence at Yellow Arrow Publishing. She has previously worked as a volunteer submissions editor at the mental health platform, Better Because Collective.

When not working, India enjoys poetry, rock climbing, hiking, traveling, and reading too many books at the same time.

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