Learning To Live With Trigeminal Neuralgia

When I was 5 months pregnant with my second child, I experienced a pain like no other.

At first, I thought it was tooth pain – as I had just been to the dentist to get a full check-up and some work done. I went back to check that they hadn’t missed something. They couldn’t find anything wrong, so I ruled that out. Over time, when the pain came back. it lasted longer and longer than the times before. Eventually, I drove myself to Whangarei Base Hospital emergency department. Waiting for a doctor, holding my face and crying wasn’t ideal in a waiting room full of other people, but I just couldn’t stand the pain any longer.

The first doctor found 2 other doctors and they all looked at me. They asked me questions, then went away again.  After a couple of hours and no answers, one doctor asked if I had ever heard of Trigeminal Neuralgia (also known as the suicide disease ). I had no idea, but at this moment any answers were better than none. I

I was 5 months pregnant and couldn’t take the drugs I needed to for the pain as they hadn’t been tested on pregnant women. I went through 4 months of attacks, lasting from 30 mins till well over an hour, and sometimes screaming into a pillow & crying. To get an idea of the pain I was going through, they say childbirth is about 60 percent decile. They told me T.N. is 90 percent. Bear in mind, I had already had a child and knew that pain. But this pain rocked my world.

Once my son was born things settled down a little, until he was about 6 weeks old then the attacks came back in full force. I couldn’t have cold drinks, but couldn’t have hot drinks either, I couldn’t go for walks just in case the wind brought on an attack.  I didn’t want to socialise in case I had an attack.  I was not confident in going shopping or even really leaving the house for too long. The medication they gave me would kick in after 40 mins into an attack. I would sit and watch the clock wanting to rip my face off – if I haven’t mentioned it already.  If you haven’t googled it, T.N, is the nerves in your face pretty much attacking you. Think of a toothache 10000x worse but inside your head nerve pain is the most horrific pain.   I looked into surgery with the doctors going into my head and cutting the nerves, but was told nerves grow back and some people have this surgery 3-4 times in their life. it’s a risk also.

Moving forward my son is now 3 years old and I haven’t had an attack for at least 6 months. I do get niggles here and there and I must admit I start to stress a little, but I’m trying everything to eliminate the attacks.  There is no cure. I could have this for the rest of my life and even though I’ve been lucky for 6 months, it doesn’t mean it won’t come knocking again at any time.

Fingers crossed it doesn’t 🤞🏻

I joined a support group.  It blows me away that more and more people are getting T.N.  It actually breaks my heart, because I definitely know the pain they are going through. I had never heard of T.N. so I’m hoping my story may help others if they are unsure what is happening to them or to know there is help and support.

Never Give Up ❤️


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