Celine Dion says she 'could've died' from taking high dosages of Valium to manage Stiff Person Syndrome on tour

• Celine Dion opens up about her struggle with Stiff Person Syndrome in her new Amazon Prime documentary.
• Dion says she tried to perform through pain by increasing her medication dosages, especially Valium.

Celine Dion breaks down in tears in her new Amazon Prime documentary, "I Am: Celine Dion," while reflecting on her final concerts before she was diagnosed with Stiff Person Syndrome.

Stiff Person Syndrome, also known as SPS, is a rare, progressive neurological disorder that affects about one in a million people, according to the National Institute of Health. Dion revealed her diagnosis in 2022, although she says in the doc that she began experiencing symptoms 17 years ago.

Dion tells the camera how SPS has tightened her muscles and caused her vocal cords to spasm, causing her voice to crack and sound thin or strained.

The documentary includes footage from performances in 2018 and 2019, including clips when Dion was struggling to hit certain notes.

"I need my instrument. And my instrument was not working. So we started to elevate the medicine," she explains.

Dion recounts one particular moment at a concert, just as she was about to take the stage, when she felt the effects of her medication wear off.

"From my dressing room, getting backstage, saying good luck to everybody, the crowd insane, my adrenaline, my heartbeat, my pressure, I'm like, 'The dream is about to come true again for me tonight. I love it so much,'" she recalls. "But then I feel a spasm, and my voice goes up. The medicine was burned out. It was gone."

At one point on tour, she says she was taking up to 80 or 90 milligrams of Valium every day. Adults are often prescribed 2 to 10 milligrams, 3 or 4 times a day for muscle spasms — about half the amount Dion was taking. Higher doses can result in coma-like symptoms and can require urgent medical attention.

"That's just one medicine," she says. "I don't want dramatic, but I could've died." While death from overdosing on benzodiazepines is rare, the risk goes up if they're mixed with other drugs or substances such as opioids or alcohol.

"I was taking those medicines because I needed to walk, I needed to be able to swallow. I needed medicine to function," Dion continues. "One more pill, two more pills, five more pills. Too many pills. The show must go on."

Stiff Person Syndrome is a rare disease that impacts the brain, resulting in muscle spasms and stiffness. Not much is known about what causes SPS itself, though it has some autoimmune features. Spasms can be random or triggered by sounds, lights, or stress.

There is no cure for SPS, but it can be managed with muscle relaxants, anti-anxiety medications, and some antibody injections.

Dion completed a 22-show greatest hits tour in 2018 before launching The Courage World Tour in 2019. She postponed the first four shows in Montreal, telling fans she had a throat virus. Later concerts were rescheduled due to a "common cold" before the entire tour was shut down due to COVID-19.

After the tour resumed in 2022, Dion continued canceling and rescheduling shows. When she announced her diagnosis, she decided to cancel all remaining dates.

Dion has said the demands of performing through her pain, as well as the "burden" of lying to her fans, became too much to bear.

"I can't lie anymore," Dion says in the doc. "From a sinus infection to an ear infection to whatever. Sometimes I would point my microphone toward the audience, and I would make them sing it. There's moments where I cheated and I tapped on the microphone like it was the microphone's fault."

The documentary also shows more recent footage of Dion in the recording studio, fighting to project her voice and reach her famous falsetto.

While the producers in the studio with Dion say they're pleased with her vocal progress, Dion says she's not satisfied — especially because she doesn't want to disappoint her fans.

"I'm not quite sure if I'm going to be capable of singing. But I can't live in doubt," Dion explains to the camera. "Maybe I can sing another kind of repertoire. But then it's going to be their choice to still like me or not."