Céline Dion Took a Near-Lethal Dose of Valium to Manage Pain from Stiff-Person Syndrome

Céline Dion went to extreme lengths to perform during her 17-year battle with stiff-person syndrome.

Dion opened up to “Today’s” Hoda Kotb on a special called “Céline’s Story” about how she coped prior to her 2022 diagnosis.

Doctors had recommended Valium to help with spasms and relax her muscles, but she built up a tolerance. At one point, she took a near-lethal dose of 90 mg.

“We tried a lot of things. Trying a lot of things when you don’t know what you have can kill you,” she said. “I did not know, honestly, that it could kill me.”

Dion continued, “Ninety milligrams of Valium can kill you. You can stop breathing. And at one point, the thing is that my body got used to it at 20 and 30 and 40 [milligrams], until it went up. And I needed that. It was relaxing my whole body.”

The star went on, “But for how long? For two weeks, for a month? But then it doesn’t work anymore. More, more, more.”

Céline also opened up to People magazine about taking Valium, saying, “We started with two milligrams to see if it would help, and then 2.5, and then 3, and 15 and 50.” The doses got higher and higher due to tolerance, eventually leading to the 90 mg in one day.

Dion said, “It could have been fatal. I did not question the level because I don’t know medicine. I thought it was going to be okay. It worked for a few days, for a few weeks, and then it doesn’t work anymore. I did not understand that I could have gone to bed and stopped breathing. And you learn — you learn through your mistakes.”

She told Hoda that she got off the Valium during the pandemic because she wasn’t performing.

Céline Dion Says She Couldn’t Hide Stiff-Person Syndrome: ‘Burden Was Too Much’

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“I stopped everything with the help of doctors, because when you taper these drugs, you can, you can die, as well,” she said. “You cannot just, like, stop everything.”

She also told People about sharing her diagnosis with her three sons with late husband René Angélil, who died of throat cancer in 2016. They shared René-Charles, 23, and twins Nelson and Eddy, 13.

“I let them know, okay, you lost your dad, [but] mom has a condition, and it’s different. I’m not going to die. It’s not something that’s going to go away, [but] it’s something that I’m going to learn to live with.”

They learned about “crisis” episodes when Dion’s entire body would become stiff and she would be in horrible pain.

“They saw a crisis — we explained it, we played it frame by frame. When I make a sound, or when I don’t make a sound, and what can they do because they’re 13 years old,” she says. “They can help me out even if I don’t communicate verbally because I can’t produce a sound.”

Her and her physical therapist started doing drills with the teens, and she said “we have panic buttons in the house and they know how to put me on my side.”

“The idea of telling them and showing them, it was not to frighten them. It is for them to know, ‘I’m your mom and it’s my responsibility,” she explaind. “You’re old enough to understand I might need your help.”

After her diagnosis, Dion told People she started a regimen of medication, immune therapy vocal therapy, and intense physical rehabilitation.

In 2022, she canceled her tour, but has made some public appearances, like presenting an award at the 2024 Grammys.

She told Hoda she wants to perform again.

“I’m going to go back onstage, even if I have to crawl,” she said. “Even if I have to talk with my hands, I will. I will. I am Céline Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to, and I miss it.”

Dion also has an Amazon documentary “I Am: Céline Dion,” which premieres June 25.

The Stiff Person Research Foundation describes the symptoms as ”muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety,” adding, “Muscle spasms can be so violent they can dislocate joints and even break bones.”