Celine Dion revealed taking up to 90 milligrams of Valium a day while suffering from then-undiagnosed Stiff Person Syndrome during a one-hour NBC News Special.
‘Ninety milligram of Valium can kill you,’ Celine said during the show titled Celine’s Story with Hoda Kotb.
The 56-year-old Grammy Award winning singer spoke to Hoda, 59, in her first television interview since being diagnosed with Stiff Person Syndrome, a rare neurological disease. During the rare one-on-one Celine shared with Hoda how she ultimately found out what was causing her throat to close up and spasm.
Celine said the song that defines where she was right now was Courage.
‘It was not true,’ Celine said. ‘I was not fine.’
‘Celine Dion revealed taking up to 90 milligrams of Valium a day while suffering from then-undiagnosed Stiff Person Syndrome during a one-hour NBC News Special
Hoda then shared how four years ago Celine’s world famous performances came to a ‘painful stop.’
‘I did not know who I was anymore because I’m not the person that I used to be,’ Celine said. ‘I was not Celine Dion. ‘
Hoda explained that Celine had been suffering from a debilitating illness.
‘I have been diagnosed with a very rare neurological disorder,’ Celine said.
Celine has not performed in public since March 2020 and has remained out of sight raising her three sons, but she had also been filming a new Amazon Prime documentary about her health battle titled simply ‘I Am Celine Dion.’
Hoda asked her after watching the documentary what life has been like for her.
‘It’s been very difficult, very painful, challenging, scary,’ said Celine, wearing a white suit. ‘I spent all my life in the music industry being a performer and loving every moment of it. This passion will never go away. And one day, while I was touring because I never stopped. I started to feel different. It was kind of like my voice was spasming.’
She revealed she started getting these spasms 17 years ago and then her little ‘cold like symptoms’ gradually got worse. She told Hoda about one night in particular.
She revealed she started getting these spasms 17 years ago and then her little ‘cold like symptoms’ gradually got worse
‘I have been diagnosed with a very rare neurological disorder,’ Celine told Hoda
Celine offered a candid look at show she’s coping with Stiff Person Syndrome
Celine has not performed in public since March 2020 and has remained out of sight raising her three sons, but she had also been filming a new Amazon Prime documentary about her health battle titled simply ‘I Am Celine Dion’
Celine is shown celebrating her 1,000th show at Caesars Palace in Las Vegas in October 2016
‘I was on the Taking Chances world tour,’ Celine said. ‘I was in Germany and I was fine and I had breakfast and then my voice started to go high…then it felt like I could not control it…I could not control anything. I had to take a plane to go to the next city. I arrived at the dressing room and I started to do my vocal exercises. Then as I went up …and then I could not go back up.’
Celine thought then ‘if you go up you better take a good look because you are going to go up just one time tonight…but I have 23, 25 songs to sing.’
‘So what happened?’ Hoda said.
‘I had to find a path,’ Celine said. ‘It was squeezed. So I said I was just going to do two songs. Normally I sing for almost an hour or 45 minutes for sound check.’
A concert film captured Celine complaining to a doctor about her voice. She told the doctor then that her main problem was her neck and that she could not relax her neck so she could not relax her vocal cords.
‘So I cannot vocal exercise well,’ Celine said.
Hoda asked her what was happening to her voice when she tried to sing.
‘It’s like somebody’s strangling you,’ Celine said. ‘It’s like someone is pushing your larynx right this way.’
‘It’s like somebody’s strangling you,’ Celine said. ‘It’s like someone is pushing your larynx right this way’
Hoda got emotional as Celine shared her story
Celine described that her voice clenched up. Celine said at first she thought it was because she had been working too hard.
‘But that thing is it was different,’ Celine said. ‘It was more spasmodic than something cold.’
Celine, who won the Eurovision contest at the age of 20, and sold more than 200 million records, talked about starting out in the music business.
‘When I started my career, I was on top of the ladder,’ Celine said. ‘My head was in the cloud. I was looking to the sunset and the stars and the rainbows and looking down.’
She shared that in that 2008 tour she started losing control of her instruments.
‘I was very, very scared,’ Celine said. ‘Just before I went on stage I asked my sound man ”I don’t know if I can do the show. I don’t know what’s happening.” And then you panic and the more you panic, the more you spasm.’
‘I was very, very scared,’ Celine said. ‘Just before I went on stage I asked my sound man ”I don’t know if I can do the show. I don’t know what’s happening.” And then you panic and the more you panic, the more you spasm’
The sound manager didn’t know what to do.
‘It was black out and I went on stage and I started to sound more nasal,’ Celine said.
Hoda said Celine’s voice continued to waver.
‘I was trying to compensate and find another way to have a voice,’ Celine said. ‘So we lowered the song a little bit with the keys.’
Celine said for her that was a smart thing to do and then she said she started to find a tunnel to make it tighter a little bit.
‘And project more nasal and hope,’ Celine said.
Hoda shared that sometimes when Celine’s voice wasn’t working properly she would pretend her microphone was broken and other nights she would rely on the audience to help her sing.
‘I was trying to survive,’ Celine said. ‘I let the people sing with me a lot.’
‘I was trying to compensate and find another way to have a voice,’ Celine said. ‘So we lowered the song a little bit with the keys’
Celine said ‘I had to lie. We did not know what was going on. I did not take the time. I should have stopped. Take the time to figure it out. My husband as well was fighting for his own life.’
Five years after her first symptoms appeared her husband and manager Rene Angelil began suffering from cancer the second time. Hoda said that Celine put much of her life on hold to be with him.
‘I had to hide,’ Celine said. ‘I had to try to be a hero. I became a nurse. I became his supporter. I had to protect my kids. Practice my passion. Feeling my body leaving me. Holding on to my own dreams. But do I have dreams, what is going on, I can’t sing.’
Rene died in 2016 at the age of 59 and two days later Celine’s 73-year-old brother Daniel also died of cancer.
The singer is shown with husband Rene in May 2008 in Paris
‘At that time, my brain, my personality, it was the show must go on,’ Celine said. ‘Regardless of your pain and your struggle.’
Celine said her symptoms started to get worse and she could feel her body get more stiff. She said every time she went to see a doctor she hoped he would be able to diagnose her and tell her what she had.
‘Tell me I’ve got something wrong because I’m going to have to make big decisions over here,’ Celine said.
Celine said she tried a lot of things.
‘Trying a lot of things when you don’t know what you have can kill you,’ Celine said.
Within weeks of her husband’s death she was back at Caesars Palace and even filled in with Hoda on the Today show that summer. She said her symptoms started to get worse and she even started blacking out.
‘I would lose it for two hours without knowing,’ Celine said. ‘Then you have a hard time to walk and you blank for two hours.’
Celine said she tried a lot of things to keep going. She shared that she started taking high doses of Diazepam, commonly known as Valium, to control her symptoms and relax her muscles.
‘I didn’t want to stop [performing],’ Celine said. ‘I would take for example before a performance 20 milligrams of Valium just walking from my dressing room to backstage it was gone already.’
‘So your body got that used to it?’ Hoda said.
Hoda said that Celine said she was taking up to 90 milligrams a day.
’90 milligram of Valium can kill you,’ Celine said.
Celine at the end of the episode sang for Hoda who asked if her voice was 100 percent back.
‘Not 100 percent back, but 100 percet on it,’ Celine said.
Hoda asked Celine if she had a message for her fans.
Celine at the end of the episode sang for Hoda who asked if her voice was 100 percent back
‘I want you to come and see me again. I would like to invite you to sing with me again. You’ve been supportive for so many years. Sometimes, I thought maybe they forgot, you know?,’ Celine said.
She later sang the upbeat song Be Happy while playing air guitar.
‘Tomorrow, I’ll sing for you tomorrow as long as the drone is there,’ Celine sang pointing to a drone used for footage.
Hoda thanked Celine for her candor and humor.