I get asked this question a lot. For those just starting their journey, hearing responses like “10 years” or “20 years” can feel discouraging. It’s rare to hear someone say they were diagnosed within 6 months – though it’s not impossible. I’ve seen videos where doctors, upon hearing a patient’s description of sudden, severe facial pain, quickly suspect Trigeminal Neuralgia. In some cases, it’s the very first episode of pain.

For me, it took 3 years. And that’s because I have 4 types of neuralgia pain.

As I reflect on my journey (not to say I’m fully healed now), there are things I might have done differently. But when I think about it, considering the level of pain I was in, would I have? Honestly, no. The pain was so intense that nothing was going to stop me from finding answers. I’ve been dismissed by doctors, told I was just anxious, or that I had a minor issue easily fixed with a simple exercise. But after 3 years and 21 doctors, it was finally confirmed that I had Trigeminal Neuralgia.

It was actually my dentist, along with a pain management specialist, who finally diagnosed my condition. They were surprised it took so long, as they had expected Neurology to identify it sooner. While not all neurologists are lacking in skill, it’s important to understand, as highlighted by the Face Pain Organization, that not all are familiar with Trigeminal Neuralgia. The neurologists I saw were general practitioners, and I needed a referral to see a specialist, which I was initially denied twice (yes, this will happen!).

Realizing I needed someone with specialized expertise, I persisted and pushed both my neurologist and PCP to submit the necessary referrals to the right department. I’m grateful I didn’t give up despite the obstacles. Today, I’m finally on the path to receiving proper treatment. A wise friend of mine said, “Sometimes you have to find the right doctors. One doctor might be great for someone else, and terrible for you. No matter what, if you keep advocating for yourself, you will find the right doctor eventually.” And guess what?! I did!

In the midst of all the pain and frustration, one thing kept me going: the knowledge that there had to be answers, and I wasn’t going to stop until I found them. If you’re still searching for a diagnosis or feeling dismissed by your doctors, know that you’re not alone. Keep advocating for yourself, no matter how many times you’re told ‘it’s nothing’ or ‘just anxiety.’

*** For those of you navigating a similar journey, I’ve compiled some helpful tips here that can guide you along the way. Be sure to check it out!