"I was in so much pain, I couldn't shower or brush my teeth for days"
There’s pain and then there’s trigeminal neuralgia. A TN warrior shares her personal account of winning over the debilitating condition
Imagine a gentle breeze on a muggy night. Now consider that breeze triggering a stabbing sensation in your face so severe, you find yourself unable to move. We usually associate pain with a dramatic cause — a broken bone, gaping wound, a slap across the face, period cramps… But what happens when even the simplest of actions, like brushing your teeth or smiling, become unbearable?
Pain is the body’s way of getting you to take notice of an issue that needs urgent attention. But in trigeminal neuralgia (TN), there is no underlying issue. Rather, the pain is the problem. Also known as tic douloureux, it is a unilaterally occurring condition that affects the trigeminal nerve. Located on either side of the face, these three-pronged nerves start behind the ear with one branch each running towards the lower jaw, upper lip and eye, carrying sensations to the face. When these nerves are compromised, it results in trigeminal neuralgia.
Dr Raashi Khatri Panjabi, a specialist in orofacial pain, describes the pain as akin to lightning striking the face. “It takes over your life, and patients often fall into depression and feel like life is not worth living. That’s why it’s often called suicidal pain.”
Trigeminal neuralgia is often misdiagnosed as dental issues or migraine. Ahana Mehra* also thought she was facing a troublesome root canal when she experienced her first attack back in 2013. Typically, people are diagnosed with TN in their 50s or later. Mehra was in her 30s and completely unaware of the condition.
Read Mehra’s inspiring fight to get her life back.
‘Living with chronic pain from trigeminal neuralgia for 10 years felt like a lifetime jail sentence.’
I was brushing my teeth one day when I suddenly felt a small stab in my gum. I assumed it was a dental issue, maybe a cavity or something. I got a root canal followed by two extractions, but the pain persisted.
By the next year (2014), when nothing had improved, I sought a second opinion. That’s when I was diagnosed with trigeminal neuralgia. It was the first I’d ever heard of it.
I was sent up to meet the neurosurgeon who scared me and my husband by suggesting brain surgery. He described the process of microvascular decompression surgery (MVD), which I went on to do ten years later anyway, but his bedside manner was so abrupt and scary that I just ran out of the hospital at that point. I remember thinking ‘I can’t do this, I’m too young.’
People usually get TN in their 50s, I was diagnosed at 36. I was really struggling with it. I travelled to London to meet a specialist and did several tests, but the vein that usually shows the trigeminal nerve being looped didn’t show up in my brain. So I didn’t qualify for the surgery at that point. The doctors told me this is a lifelong chronic condition, and asked me to move to London for treatment. But I couldn’t just up and move like that.
That’s when a friend introduced me to Dr Panjabi in Mumbai who made the whole experience bearable. She put me on medication to help manage the pain. I was on Tegretol and Lamictal, which are used to treat bipolar disorder, even though I was not bipolar. They numb your nerves to ease the triggers, which helped initially, but soon enough, despite being on the highest possible dose, the pain returned.
I had reached a point where I just couldn’t function. I couldn’t speak, put on makeup or wear my contact lenses. Even touching my eyelash was torturous. There were days when I’d go without washing my face, showering or brushing my teeth. I’d just be in my bed for weeks on end. In 2022, Dr Panjabi recommended sinus surgery to relieve the pressure and alleviate the pain. While it did help me a bit, I realised the situation was too far gone. To make matters worse, a birth defect resulted in one kidney being removed when I was 3, so increasing the medication put me at risk of renal damage.
I did another MRI and this time, the looped nerve showed up in the scans, qualifying me for MVD surgery. The surgeon drilled a hole in my skull and inserted a piece of Teflon between the vein and the nerve so that they wouldn’t touch each other and trigger the pain. It’s a difficult surgery, and the recovery is brutal.
I couldn’t find any information about it, so I joined support groups on Facebook which gave me a lot of comfort. You don’t feel as lonely when you know somebody else understands your pain. I also ended up creating an Instagram handle (trigeminidiaries) to document my journey so that I could help other people.
The recovery is six to eight months long, and you have to be on complete bed rest for at least three to six weeks. When I first woke up from the surgery, I was in a lot of pain from the screws of the head brace. Plus, I had ghost pain because the nerve was still raw. I was scared, what if the surgery wasn’t successful?
Thankfully, around six weeks in, the pain completely went away. I was able to wean off the medication by gradually reducing the dosage. The day I finished all my medication, my husband and brother-in-law filled my pill box with gummy bears.
Without the unwavering support and love of my spouse and close friends who would jump into conversations when I couldn’t speak or gave me endless hope when I had none, the disease would surely have broken me. To anyone who is suffering alone in silence, I’d say please find your tribe and you too will come out a TN Warrior on the other side because you are not the only one and you are certainly not alone. You can also DM my Instagram handle, I’ll be happy to reply.
Today, I feel like I’ve been reborn. So many people have asked me this year, “How come you’re looking so good? What have you been doing?” I say, “I went to Pilates.” It’s a lie — it’s not Pilates, it’s because I feel free.”
Understanding Trigeminal neuralgia
Statistics from 2019 say that women are more likely to suffer from trigeminal neuralgia, and 90% of the time, the condition springs out of nowhere, says Dr Panjabi.
While the exact cause is still a mystery, there are a few commonalities that have been found to trigger the pain. The most common one is when a pulsating artery nearby wraps itself around the nerve, compressing it. Other times, dental work or a botched root canal and sinus-related issues can trigger trigeminal nerve pain. “After COVID-19, we’re seeing that auto-immune conditions, lowered immunity, stress and lowered vitamin levels can also trigger the pain,” says Dr Panjabi.
Sometimes, pre-existing conditions in the body can make one vulnerable to developing trigeminal neuralgia. People with vitamin deficiencies, multiple sclerosis or jaw-joint conditions like clenching the jaw under stress are often susceptible to developing TN.
According to Dr Panjabi, early diagnosis, medication, correct supplementary nutrition and taking care of any simultaneous issues that might trigger or increase trigeminal pain is the key to preventing it or starting early care for it.
Trigeminal is almost always mistaken for dental problems, eye issues or sinus concerns in the beginning. A lot of people go on a teeth-removing frenzy to get rid of the pain. And since it goes into remission, it’s hard to track it as something that needs your immediate attention. It’s only through diagnostic methods such as MRIs, scans and eliminating all other possible causes of pain that one can detect trigeminal neuralgia.
Treatment options include medication, pain management techniques and surgical options. Some anti-convulsants are the gold standard for treating trigeminal. They shut down the nerve, preventing the pain from getting triggered. “Medication breaks the attacks the patients get. We give medicine for the time period of the attack and a little bit longer than that. I usually bring down the dosage after a while. And very often, we have seen that it has allowed patients to have five to seven and even 10 years of comfortable pain control,” Dr Panjabi maintains.
In some cases, medication is not enough to control the pain and that’s when surgery becomes an option. MVD is one way. Another is Gama Knife which uses radiation to separate the nerve from the artery. It’s a relatively non-invasive but surgical option available to patients.
For Mehra, the risks of the surgery were outweighed by the chance of getting her life back. She says, “Living with chronic pain for 10 years was like getting a lifetime jail sentence. Now I’m in the free world with a new chance.”
*Name changed for privacy
This is a personal account as told to Shivani Pathak