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Jesse James Decker was on tour in Austin in May 2019 when she woke up with a migraine.
"It wouldn't go away," she tells PEOPLE. "That was the worst migraine I ever had."
The 33-year-old singer took ibuprofen and drank caffeine, but since she had a 90-minute meet-and-greet with fans before going on stage at the Moody Theater, she couldn't incorporate her usual migraine remedies like essential oils, neck stretches or a hot bath.
Two songs into her set, Decker walked off stage and asked the tour assistant to get her some headache medicine.
"It was horrible. I had to take it onstage. I had one of my band members perform a song while I tried to pull it together," she remembers. "Then I went back on and I played through it. It was pretty horrid, but there's times like that, where it just comes on and there's nothing I can do. "
Decker gets two or three migraines a month.
"They happen all the time," she says. "I've just always thought that was normal – and apparently it's not."
Born on an American Army base in Vicenza, Italy, Decker started singing when she was 2 years old, and at 9 she first performed onstage in a talent show in Baker Louisiana.
"I won the whole show," she says. "I fell in love with it and I was like, I want to do this forever."
It was in middle school that Decker first started getting migraines. The pain felt like a sunburn on the left side of her face, she remembers telling her mother Karen Parker.
"It felt like little bugs were biting the left side of my scalp and my eye would burn," Decker says. "It would just be like the most severe pain ever, but it would sometimes only be in certain spots of my head."
As she got older, her migraines got worse.
She met her husband, former Denver Broncos wide receiver Eric Decker, and in 2011 he convinced her to see a specialist about her chronic migraines.
"I had my whole brain scanned," Decker says. "I was worried that I had like a sort of aneurysm just waiting to happen. I just kept having all these different fears because they were getting worse. So I went in and I had tons of testing done."
At her follow-up appointment, the doctor told her the good news was she did not have a brain aneurysm or a brain tumor – but she did have extremely severe migraines.
"She said that there are only 4 percent of people in the world that get the level of migraines that I get," Decker remembers. "She said that there was nothing I could really do except physical therapy."
Soon after that crushing migraine while on stage in Austin, her migraines started to interfere with her singing voice.
"I kept losing my voice on stage," she says. At Vanderbilt University Medical Center's voice clinic, she had her vocal chords checked, but they were fine.
She was soon diagnosed with TMJ.
"It's all connected," she says. "I grind my teeth at night…. which means I'm straining so much on my neck muscles, which has been grinding up against vocal chords, which is why I was losing my voice. So the migraines, the TMJ, all of this is super connected in my head, and my neck, and causes me a lot of neck pain."
She now gets regular massages and weekly physical therapy.
Even though she's battled migraines for years, she's still isn't positive what triggers them.
"They say stress," she says. "But there are times where I'm just like, 'I don't feel stressed.' I don't feel like anything's bugging me…. It can be certain things like sleeping wrong."
When she feels a migraine starting, she takes ibuprofen, then runs a warm bath with Epson salts and puts a cold rag on her neck.
She also keeps a box of essential oils her mom bought her on her bedside table.
"I go crazy on the essential oils," she says. Her favorite is a blend of sweet orange, lavender and rosemary.
"The main thing you have to do is just rest and relax," she says. "I've gone to different doctors that have tried to give me heavier pain medication, but I don't want to do that. It's just not my thing. And so I just kind of have to fight through it."
The pain starts in different parts of her head. "Sometimes it'll be so heavy that the left side of my face will feel like a sunburn," she says. "Then parts of my scalp will feel like I'm getting like stabbed by little needles. And my left eye, will feel like it's burning — even touching my eyelashes will sting."
Eric helps by stretching her neck.
"He's just so sweet," she says. "It helps that he was a professional athlete, because he takes the body and pain so seriously — he does not mess around. If I tell him something's hurting, he's like, 'Tell me where.' "
"I can always rely on him to help me get relaxed and get comfortable," she says.
Decker wants other migraine sufferers to know that they're not alone.
"I know it can be so hard," she says. "A lot of times people that don't have migraines really don't understand how horrible they are."
She finds comfort and support talking about her migraines with friends.
"My best friend gets migraines," she says. "It's nice to talk about it and try to learn from each other — because it's not something that's just going to go away. It's something you have to live with, you have to deal with."
Currently, Decker is working on her third cookbook, Just Feed Me More. She's opening new locations of her store Kittenish in Tampa and Dallas. And she's working on new music in preparation for her next tour.
"I was supposed to put out music last year, but because of the pandemic, we decided to hold off," she says. "I didn't want to just throw something out there, and then not be able to really sing it for everyone in person. So we will have music out by the time I announce this tour."
She and Eric married in 2013. He retired from the NFL in 2018, and is now President of Kittenish.
They spent a lot of time with their three kids – Decker takes 7-year-old daughter Vivianne to gymnastics class. "She's incredible," Decker says. "She's just madly in love with it." Their son, 5-year-old Eric played baseball this spring. And she bakes cookies once-a-week with their 3-year-old son, Forrest.
She wants other people who get intense chronic migraines to stay hopeful.
"It gets better," she says. "Listen to your body, listen to what it's telling you, and just take it easy."
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