Celine Dion took up to 90 milligrams of Valium battling stiff person syndrome: ‘It can kill you’

Celine Dion took near-lethal levels of Valium while battling stiff person syndrome.

The 56-year-old singer revealed in a new interview with NBC News’ Hoda Kotb that she was prescribed Valium to be able to perform and control the symptoms of the autoimmune neurological disorder.

Dion said on “Celine’s Story,” the hour-long special that aired Tuesday night, that she gradually built a tolerance to the drug, and at one point, she was taking 90 milligrams a day.

“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.”

“But for how long?” she added. “For two weeks, for a month? But then it doesn’t work anymore. More, more more.”

Dion, who said she started experiencing SPS symptoms as early as 2008, told People more about her decision to take Valium to treat the disease.

“It could have been fatal. I did not question the level because I don’t know medicine,” she said. “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.”

The “All By Myself” singer also clarified that she “did not take medicine just to drug myself, just to be high or to be stoned.”

During “Celine’s Story,” Dion said she cut back on Valium during the COVID-19 lockdown because she was no longer performing.

“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 according to Dion, her symptoms got worse after she stopped taking Valium, leading her to announce her diagnosis with SPS in December 2022.

Dion said in the special that she had to “hold on to chairs and tables” when her condition got worse. She also said she broke multiple ribs from spasms and began “blanking out for hours.”

According to Columbia University, SPS causes painful muscle spasms and affects one in a million people.

“You think of the simple things, you’re not thinking you’re gong to die,” she told Kotb. “You can have what looks like seizures, you don’t remember everything.”

Dion canceled her tour dates when she revealed her condition to the world. Since then, she has made some appearances in public, including at a November 2023 hockey game in Las Vegas and the 2024 Grammys in February.

In the NBC special, Dion said that she’s determined to perform again for her fans.

“I’m going to go back on stage, even if I have to crawl. Even if I have to talk with my hands, I will. I will,” she shared. “I am Celine 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 is opening up more about her health battle in the new documentary “I Am: Celine,” which comes out June 25 on Amazon Prime Video.

When she announced the doc in January, Dion explained in a statement that she felt it was important to capture her journey during this difficult time.

“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” she said.