Lifestyle

5 People On What It Actually Feels Like To Have A Migraine

Share your #MYgraine experience.

By Erin Kelly

Migraine symptoms may seem invisible to outsiders, but the debilitating condition is actually one of the leading causes of disability in the world. So you may find it surprising that it takes an estimated six years for many individuals to receive their diagnosis!

The reason for this diagnosis gap — or the time it takes from your first migraine to confirming the root of your head pain — is likely the variation in signs and symptoms individuals can experience and when they begin, says Elizabeth Seng, Ph.D., a clinical psychologist and head pain and migraine researcher in New York City.

“[Migraines] are different from a lot of other diseases because they hit people in the prime of their lives, when they’re supposed to be going to college, starting careers, or starting families,” says Seng. “Instead, they’re dealing with severe, unpredictable neurological attacks.”

Unfortunately, many young adults chalk up their symptoms to another illness, like the flu or chronic stress. Often, they don’t recognize what’s happening to them because migraine symptoms are different for everyone and don’t necessarily follow a classic pattern. Instead, people may suffer in silence for years.

That’s why Seng has partnered with Excedrin on #MYgraine, an integrated initiative that’s pledging to close the Migraine Diagnosis Gap by encouraging individuals to share their migraine experiences visually via social media. By bringing to life the invisible symptoms of migraines through visual representation, #MYgraine is encouraging sufferers to speak with their doctor — and know they’re not alone.

To help anyone who may be suffering silently or is curious if their head pain is part of a larger problem, we asked five migraine sufferers to share what it feels like to actually have a migraine.

Greenberg uses the medium of makeup to visually express what it feels like when she experiences a migraine.

Jamie Greenberg, a celebrity makeup artist, has been experiencing migraines for 26 years. After living with her invisible condition for years, not realizing what was happening to her, her parents pushed her to see a doctor during a migraine attack that got so violent it caused her to vomit.

“My migraines usually start with an aura, which I sometimes call ‘the headache butterfly,’” she says. “That’s usually the tip-off that I better get ready and prepare for something bad that’s coming — it’s psychic. Next, I feel like my head is in between a vice, like there’s this intense pressure closing in. Finally, there’s this immense, throbbing pain behind my eye socket. It feels like a knife is stabbing me in the eye.” These symptoms are expressed in Jamie’s #MYgraine image above.

With time, Greenberg has found many coping mechanisms to live with her symptoms, including meditation, a healthy lifestyle, and keeping Excedrin Migraine on hand at all times.

“The thing about migraines is they are such a personal experience, and people can’t physically see your pain, so I want people to know they’re not alone,” she says. “And the #MYgraine initiative is a great representation of that.”

When Lexi got her first migraine, it was while she was still very young. “I was home for the summer after my freshman year of college, which was a very stressful couple of semesters for me,” she says. “I remember playing cornhole in the backyard with my mom, when all of a sudden a cold, numb, tingling sensation started to move from my legs to my arms, then back down again. It was unnerving but not nearly as concerning as the temporary blindness that eventually set in.”

One trip to the ER in an ambulance and an MRI later, the head pain finally set in. “They thought it might have been a stroke or an aneurysm, so I had to get all the neurological tests before they concluded it was a migraine with an aura,” says Lexi, who recalls the pain being so debilitating, she could neither keep her eyes open nor closed to sleep.

“Now I know what to expect and what triggers me,” she says. This usually includes a combination of hot weather, dehydration, and — oddly enough — lying on her stomach propped up on her elbows. “I don’t know why, but maybe it pinches a nerve just right, and that triggers it,” she says. “But as soon as the tingling and vision impairment kicks in, I know to take Excedrin Migraine immediately and try to nap for a few hours. Otherwise, I’ll be in such an uncomfortable fog, I can’t even hold my head up.”

For Shirley, migraine symptoms largely depend on the trigger but are almost always accompanied by nausea, irritability, pressure on the back of her neck and forehead, and painful eye movements.

“A stress migraine will stick around with me for a day or two and come on during any stressful event in my life,” she says. “Lately, it seems like there’s always an event to trigger it. It feels like an elephant is trying to stand on its tiptoes and balance itself on my head.”

Then, there are menstrual migraines, which reach their peak on the first day of her period.

“[Menstrual migraines] make me feel like I’ve been under water without oxygen for too long, or like a bear is giving me a tight squeeze around my head and neck,” says Shirley, who realized her migraines were different from headaches due to the difference in pressure intensity — and because typical pain medication just didn’t work. If you’re curious about your symptoms, you can learn more about how to differentiate migraines from headaches with Excedrin’s migraine resource.

Aleah hopes that her art helps others know they aren’t alone, and there is relief and support out there for migraine sufferers.

For artist Stina Aleah, her Migraine Diagnosis Gap lasted 16 years from the first time she experienced symptoms around age 12. “Honestly, I really didn’t understand the diagnosis, so for a long time, I called them really bad headaches and treated them as such,” she says. “But when I noticed my oldest sister was experiencing migraines and her symptoms were similar to mine, I was motivated to go to a doctor to get help.”

Those symptoms include pain, nausea, and fatigue. “My experience happens in steps,” says Aleah. “First, I’m parched. Then, there is a slicing-like pain through my face. I experience light sensitivity. The pain intensifies, making me nauseous, and sometimes I will vomit. Physically, my body just shuts down, and I can’t move.”

But Aleah insists that being proactive is key to managing migraines. “Do not suffer in silence,” she says. “Speak with a specialist. I used to keep a migraine journal, which helped me understand my triggers, so I recommend people try that out, too.”

Kim suffers from ocular migraines, which means that her vision is affected before the pain actually sets in.

“At the onset, I’ll start to see a shimmer — sometimes a line across my vision or speckles throughout my eyesight — and from there, the shimmer starts to expand,” she says. “Next, I will completely lose my peripheral vision, and sometimes 90% of what I can see. Luckily, there is no real pain at this point, more just anxiety and fear of the headache that is approaching.”

Kim has experienced this feeling while driving, sleeping, during the day, on work calls, and during time with family and friends — and it warns her that a headache is fast approaching. “Even after the headache subsides, my whole body is affected until the next day,” she explains. “I feel lethargic, nauseous, and like I am operating at a very slow pace.”

Seek Help

If any of these symptoms sound familiar, or if you’re experiencing any head pain that’s interfering with your life, Seng encourages you to talk to your doctor about your symptoms to get the proper diagnosis and determine a treatment plan.

“The first thing I would recommend that people do is go to the Excedrin migraine website,” she says. “There’s an incredible wealth of information and a lot of answers to some of the most common questions people have about migraines. I also strongly recommend following #MYgraine on social media to see other people’s lived experiences with migraines and find people you identify with.” While you’re there, be sure to share your own experience and help the next generation of sufferers recognize potential symptoms.