By Alyce Collins
BEING diagnosed with an intense pain condition known as ‘SUICIDE DISEASE’ wasn’t going to stop this brave woman from becoming a mum as she refused pain killers to achieve her dream which left her in agony for months.
Toni Lea Lawrence (33) from the Gold Coast, Queensland, Australia, was a senior paralegal for 13 years but unfortunately, she was forced to give up her career after being diagnosed with a rare chronic pain condition affecting the trigeminal nerve.
While she was at work in March 2010, Toni Lea was engulfed in pain and her left side stopped functioning. She feared she was experiencing a stroke, and when a colleague commented that her face didn’t look quite right, she panicked and she swiftly went to the GP surgery nearby.
The doctor who saw Toni Lea thought she could have a brain tumour and sent her for an MRI. As her pain intensified, nurses gave Toni Lea pain medication after her scan to ease the agony. The intense pain is caused by a condition called trigeminal neuralgia (TN) which sees even minor facial stimulation trigger excruciating pain.
It is unknown what caused the condition in Toni Lea’s case, and although it isn’t curable it can be manageable with daily pain medication. She explained that the pain can feel like a burning pain on her left side and as though her teeth are being pulled out by fishing wire.
Toni Lea was distraught to learn that the pain medication would have a negative impact on her fertility, but after marrying her husband Kieran (32) in 2015, she couldn’t ignore how much she wanted to be a mum. Her longing brought her to the brave decision to wean off her pain medication so she could get pregnant – which fortunately happened in September 2016. The pregnancy was incredibly difficult as it heightened the pain, but she couldn’t take any pain relief to ease it, until immediately after the birth of the couple’s son Theo (2).
“I was a senior paralegal for 13 years, but I had to give up my career when my pain got too much,” said Toni Lea.
“In March 2010, I was sitting at my desk reading emails and my first thought was that I was having a stroke because I was in so much pain and my left side was struggling to work, and I could barely talk.
“My colleague came up to me and said my face looked strange, referring to the left side of my face because I couldn’t move it due to the pain.
“The doctor’s surgery was straight across the road from work, so I went there straight away. The GP thought I might have a brain tumour, so I was sent for an MRI immediately.
“Nurses gave me pain relief and I was able to talk again so I asked what was wrong with me. The doctor diagnosed me with trigeminal neuralgia, and I had no idea what it was. I was just hoping it was something that could be fixed quickly.
“I took a lot of pain killers and anti-epileptic pills, I was also admitted to hospital for pain a lot of the time, but nothing was working. I had brain surgery two months after being diagnosed but it was unsuccessful in numbing the pain.
“The pain started off like an electric shock, sometimes like a thick elastic band snapping against my cheek and gums. After 10 years, the pain has changed a lot, and the pain I have now is a constant burning pain on the left side of my face. It also feels like someone has fishing wire wrapped around each tooth and is trying to pull them out. My tongue feels like it’s being cut in half, it’s numb and tingly. I get a pain like an electric shock around my eyes.
“It is triggered by stress, touching my face, really cold weather, really hot weather and wind hitting my face.
“I found out that prolonged use of the pain medication is linked to infertility in women, and the unbearable pain means that most women with TN can’t carry a child at all. It was scary, all I ever wanted was to become a mum so the thought of not being one was awful.
“I learned how to wean myself off my meds so I could fall pregnant and by August 2016 I stopped taking anything. It was a difficult decision to come off my medication because I knew my pain would be horrendous and it would be such a long time to deal with it without medication, but I wanted a child so badly.”
Trigeminal neuralgia is often referred to as the ‘suicide disease’ because the pain is so unbearable, yet Toni Lea refused to let it stop her from becoming a mum. After discovering she was pregnant in September 2016, she took regular walks to distract herself from the pain and used heat packs frequently.
When she was 35 weeks pregnant, while making her way downstairs to find a heat pack to soothe the pain, Toni Lea slipped down the flight of stairs and landed on her hands and knees. The fall caused the baby to drop and made contractions begin, although doctors managed to hold off Theo’s birth for another week when he was delivered via caesarean.
“When I was pregnant, the pain wasn’t too bad at first but from week five it got increasingly worse,” she said.
“I took as many walks as I could to distract myself and used heat packs. One day at 35 weeks, I was folding clothes in the nursery and pain quickly took hold of my face. I made my way downstairs to get my heat pack, but I couldn’t think clearly.
“I started to fall down the full flight of stairs and at the bottom I instantly started to cramp. The fall pushed the baby right down into my pelvis.
“A few days later I started having contractions, and I had to have an early c-section at 36 weeks because of the fall and my pain. Theo was born on April 13, 2017.
“Straight after his birth I was able to start taking pain medication again, but because of this I was unable to breastfeed.”
Toni Lea shares her journey on Instagram @motherhood_by_tonilea to raise awareness for TN and inspire hope in others.
“I would love to have more children, but my pain has got so bad over the last few years that it would be impossible for me to cope without medication. I had radiation earlier this year and I feel like it’s made my pain so much worse, so it’s out of the question unfortunately,” she said.
“Never give up on your dream, I always wanted to be a mum and it happened. When you have a condition like this, just take one day at a time. It’s tough and you find yourself asking how on earth you’re going to be able to keep putting up with this amount of pain, but you wake up the next day and you do it.”
To see more, visit www.instagram.com/motherhood_by_tonilea