Trigeminal neuralgia: Kiwi mum-of-six lives in constant excruciating pain

Stacey Welsh and her family. Photo / Supplied

Stacey Welsh has given birth six times but says the pain she has been experiencing is “a million times worse” than childbirth.

Once the “picture of health”, Stacey’s life changed overnight about a month ago when she was diagnosed with trigeminal neuralgia, a chronic pain condition that affects the trigeminal nerve, located in the back of the skull, which carries sensation from your face to your brain.

Stacey, who turns 34 next week, says she’s been fit and healthy all her life, with no history of migraines or even headaches, and has rarely even needed to take paracetamol.

Once a fitness enthusiast and a busy full-time student and mother of six children, she now spends her days in agonising pain. Her life, she says, changed in a split second.

Stacey with one of her children in Wānaka where the family lives. Photo / Supplied
Stacey with one of her children in Wānaka where the family lives. Photo / Supplied

One Tuesday last month, she was sitting at home studying when she took a sip of orange juice and, out of nowhere, she was hit by the most excruciating pain she’d ever felt.

“There was no buildup, no warning signs, no cause, no reasoning. It was literally the most spontaneous attack of pain you can imagine,” she told the Herald from her home in Wānaka where she lives with her husband and six young children.

At first, she thought she had an abscess so booked herself into a dentist – but an X-ray revealed her teeth were all healthy. She then assumed she had a sinus infection but no pain killers were working to clear it up.

It didn’t take long for her GP to diagnose her with trigeminal neuralgia, a condition she had never even heard of – and which typically affects women much older than her.

“The GP put me on some medication and then I went back again twice that week and then ended up in Queenstown Hospital, threatening to cut my own face off, that’s how bad the pain was,” she recalls.

Hot compresses provide mild relief for her excruciating pain. Photos / Supplied
Hot compresses provide mild relief for her excruciating pain. Photos / Supplied

She has been put on nerve blocker medication which has brought the pain level down but she still has flareups and is still learning what triggers those.

Because of her young age, she is somewhat of a rarity among trigeminal neuralgia sufferers. Her life, as she knew it, has come to a halt and she is desperate to get some semblance of normality back, for herself and her family.

Stacey’s six children, aged between 10 months and 14 years old, try to help but struggle to understand what mum is going through.

“My little boy who is 6 said ‘I just want you to be better mummy’. Because it’s invisible, it’s really hard for them to understand why mum can’t do normal things like have an ice cream, or her morning coffee,” she says.

The chronic pain is more common in women than in men and usually affects women over 50.

Stacey is in the prime of her life, with six young children who need her, and is studying with the goal of becoming a midwife. But now, all of that has been put on hold.

Up until a few weeks ago, her life involved running around her children, studying full time and going to her beloved F45 sessions at the gym. Now she spends her days waiting for the next bout of crippling pain to take over, and is just trying to make it through the day.

“I’m in pain every single day, just not to the extent I was [before the diagnosis]. My life is on hold. I can’t wake up to my 10-month-old daughter in the night. My goal was to be a midwife and now that’s on hold too. I need the surgery to continue my path,” she says.

The nerve blockers, while they help with the pain, mean Stacey is constantly groggy and has no balance, making simple day-to-day tasks extremely difficult.

“You can’t not parent your baby,” she says.

Stacey struggles to look after her children, as she lives in pain every day. Photo / Supplied
Stacey struggles to look after her children, as she lives in pain every day. Photo / Supplied

The Wānaka mum is scheduled to get an MRI next week, to assess what options are ahead for her. Surgery for trigeminal neuralgia, if she can get it, costs $45,000 done privately – a cost her single-income family of eight cannot afford.

While treatment for the condition is publicly funded, she has chosen to try to find the money to have it done privately because she says the process would otherwise be a lot lengthier.

“I don’t have time on my side when I have six kids. There is a process, trying the medication, waiting for a MRI… even privately the wait for the MRI was two weeks,” she says.

“I want and need to get back to my old life asap. My GP couldn’t tell me [how long it would take to have it done in the public system]. And said the the surgeon in Christchurch has a great reputation for Microvascular decompression (MVD) surgery.”

The local community has come together to try to help the Welsh family, and Stacey’s family, although they live in Dunedin, are trying to help too. Her sister and mother have both visited recently to try to help her with childcare and a friend has offered to do daycare dropoffs.

“My friends have been amazing. The community in Wānaka is absolutely incredible. I’ve had meals delivered, vouchers … everyone has helped us so much.”

A friend has also started a fundraising page on Givealittle to raise money for Stacey’s lifechanging surgery.

She has raised more than $27,000 in ten days but still needs another $18,000 to reach her goal, without having to get the family into debt.

What is Trigeminal neuralgia?

Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve (fifth cranial nerve), located at the back of the skull, one of the nerves responsible for carrying sensation from the face to the brain.

Compression of the nerve leads to it sending a wrong pain signal to the brain, leading to sudden, severe attacks of electric shock-like pain to the face.

The pain attacks can be triggered by certain actions or movements, such as eating, smiling, chewing, talking, or brushing teeth. Drinking hot or cold drinks, walking outside in the cold weather, and even just moving the head is enough to trigger a flareup.

The condition is more common among women aged over 50 years old.

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