A FORMER dancer has told how putting on make-up triggered a rare nerve disease that has left her housebound – and unable to kiss her boyfriend.
Mackenzie Lea, 21, was diagnosed with trigeminal neuralgia – a chronic pain condition that affects the nerve connecting the brain to the face.
The aspiring doctor, from Alberta, Canada, first began experiencing facial pains when she was 10 – but it eventually stopped.
She assumed a flare-up aged 12 was down to a migraine and she felt nothing again until three years later.
In July 2013, Mackenzie was putting on make-up when she was suddenly overwhelmed with excruciating pain.
She feared for her life thinking that she may have a brain tumour – and immediately booked to see a doctor.
TUMOUR FEAR
MacKenzie said: "I thought I had a brain tumour and that I was dying because I didn’t think that such a level of pain was possible without knocking on death’s door.
"‘I was putting make-up on so touching my face when the pain was triggered.
"I was terrified and I had no idea what was happening."
Medics were initially baffled – and began Mackenzie on a course of drugs including antibiotics and allergy medication as they tried to work out the cause of her debilitating pain.
But another intense flare-up in October of that year left Mackenzie hospitalised for a full week.
TESTS AND SCANS
She underwent brain scans and had fluid taken from her spine for testing as doctors scrambled desperately for a diagnosis.
It wasn't until April 2014 that a doctor was finally able to work out the problem.
Mackenzie explained: "I talked with the doctor for a couple of minutes about my scans and he medication I had tried.
"He decided to do a physical exam and he asked if the pain affects one side, so I said it was mostly on my right side.
"He asked if it would hurt when he touched my face and I said that I’d rather him not touch it because it would hurt.
"Then he said he knew what I had and asked if I could give him a couple of minutes to do some research.
"When he came back, his face had gone from bright to pale and he said he’d never seen a case in children, but it was trigeminal neuralgia.
"I felt a number of emotions but the main one was relief because all I had wanted was a diagnosis.
"I told myself that once I had a diagnosis then they could treat me and I’d be fine.
"I never imagined that modern medicine wouldn’t be able to treat something.
"The look on his face was a bit unsettling and I knew he was going to tell me something bad.
"I was told that it was a form of nerve damage that was very rare, and there wasn’t an easy fix."
Nerve agony: What is trigeminal neuralgia?
TRIGEMINAL neuralgia is sudden, severe facial pain.
It's often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums.
Trigeminal neuralgia is usually caused by compression of the trigeminal nerve.
This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.
The attacks of pain are usually brought on by activities that involve lightly touching the face, such as washing, eating and brushing the teeth.
But they can also be triggered by wind – even a slight breeze or air conditioning – or movement of the face or head.
Sometimes the pain can happen without a trigger.
Attacks usually happen in short, unpredictable bursts that can last from a few seconds to about 2 minutes.
The attacks stop as suddenly as they start.
In most cases, trigiminal neuralgia affects just one side of the face, with the pain usually felt in the lower part of the face.
Very occasionally the pain can affect both sides of the face, although not usually at the same time.
People with the condition may experience attacks of pain regularly for days, weeks or months at a time.
In severe cases attacks may happen hundreds of times a day.
Source: NHS
Strong medication resulted in Mackenzie breaking out in painful sores – leaving doctors no option but to opt for complex surgery.
Mackenzie went under the knife as surgeons tried to relieve pressure on her facial nerves.
But within three months of the op, she was back at the Intensive Pain Rehabilitation Program.
The programme involved physical, mental and occupational therapy to cope with her condition.
Such was the severity of her condition that Mackenzie's life ground to a halt and she had to give up her dreams of studying medicine.
Any slight movement or stimulation to her face left her in agony for days – meaning she isn't even able to kiss her loving boyfriend Jon.
But after turning 18 in February 2016, Mackenzie was transferred to an adult neurologist.
The specialist took a different approach to treating her condition – including using Botox, blocks and infusions.
Since then, her flare-ups have been far less common and her pain less intense.
I can barely move without being overwhelmed by pain, so working isn’t an option
She added: "I do have flare-ups now and then but it’s not progressing.
"Before, I was planning on going to med school and I was a dancer too but all of that stopped.
"The side effects from medication and the pain itself make it too hard to focus and learn.
"I can barely move without being overwhelmed by pain, so working isn’t an option.
"There are things I wanted in the future, like having children, which may not be possible anymore.
"I feel lucky that my boyfriend knew me before my illness and he got to see my at my full capacity.
"He’s seen what I’m capable of, in both an able and disabled body.
"One of the hardest things is feeling like a burden as he’s young and able and I worry about holding him back.
"It also sometimes hurts to kiss him, which can be really frustrating for us.
"Even if someone isn’t dealing with this disease specifically, everyone has their own burdens to carry.
"I’d love to show people that being dealt a bad hand doesn’t mean you can’t have a fulfilling life."
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