Celine Dion relied on heavy doses of Valium to get through shows and fight rare condition

Celine Dion’s desperate desire to perform while she fought a rare neurological disorder once pushed her to regularly take up to 90 milligrams of Valium a day, she said — doses that could’ve been deadly.

Dion, the famed Canadian singer, has been sidelined with stiff-person syndrome, a debilitating condition that affects roughly 1 or 2 out of every 1 million people.

Dion, a five-time Grammy winner, said that to control symptoms, she started with 20-milligram doses of the powerful medication, which can curb muscle spasms and seizures. Adult doses typically are 2 to 10 milligrams.

But as her body became accustomed to that dose, Dion said, she’d end up having to increase it — up to 90 milligrams on some days.

“Ninety milligrams of Valium can kill you. You can stop breathing,” Dion told NBC News’ Hoda Kotb. “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.”

Dion said she finally cut back on the medicine when the Covid-19 pandemic struck in spring 2020, because there were no more performances while much of the world economy went into hibernation.

“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.”

But once she got off medicines, the symptoms worsened.

Dion shocked her fans in late 2022 when she disclosed she was suffering from the rare condition, which has stymied her comeback efforts.

Dion has pledged to perform again despite her ongoing struggles with stiff-person syndrome, which can bring severe symptoms at a moment’s notice.

“The episodic muscle spasms are often triggered by various things, including stress. That can be good or bad emotional stress,” said Dr. Amanda Piquet, a neurologist in Colorado who has been treating Dion. “So it can be doing something you love, such as signing. And we can see those muscle spasms come out.”

Oscar-nominated director Irene Taylor included a jarring scene in her upcoming “I Am: Celine Dion” when Dion’s foot cramp quickly morphs into a scary shutdown when she can’t speak or move.

Taylor called it the most “extraordinarily uncomfortable moment in my life.”

“Her body was enduring something that was unimaginable,” Taylor said.

The daily threat of such a shutdown has led to blunt talks with Dion’s children, who know not to panic if Mom suddenly isn’t moving.

“‘Don’t be scared if I can’t talk. Mom’s not dying. Mom cannot use her vocal cords. If I [do] not respond to you, it’s possible that I hear you, but I cannot communicate,'” Dion said she’d told her 13-year-old twins, Nelson and Eddy. “They know what to do: call 911.”