NeuroTalk Support Groups - Diagnosed With Trigeminal Neuralgia at 18

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Diagnosed With Trigeminal Neuralgia at 18

My name is Caitlin and I was just recently diagnosed with Trigeminal Neuralgia a few months ago by my brain doctor. Four years ago is when it all started. I have always had very bad sinus/ear infections since I was a baby. Four years ago, I had a sinus infection that was so bad, it lasted a year. My ENT put me on multiple antibiotics that year to get rid of it, and I ened up having an allergic reaction to each one, badly. He finally had to do surgery. after that it all went downhill. I have had braces and my wisdom teeth out, and ear tubes twice etc... so my doctor thinks that all that may have been what caused it. I do not have electric shocks in my face though, I have a dull, aching pain that is always there, NO MATTER WHAT. I sometimes have them in my ears, but not in my face? So I'm so confused! It hurts to press my face, and certain spots, so thats why the docs always assumed that I had an infection.For a few years I think the doctors thought I was crazy, they put me on antibiotics every month thinking I had an infection because my face hurt so badly, and my ears. But it never worked. I have severe allergies along with all this pain. My doctor put me on topamax and I am slowly upping it. I am on 150mg a day and next week will be on 200mg. In a few more weeks it will prob be 400mg because I am still in pain. I was wondering if anyone had any tips on how they cope with their pain in their face and ears, and the headaches etc....I also have migraines, it runs in my family along with the allergies, lucky me :) Thank-You

Hi, I'm sorry you're in so much pain!
I don't really get electric shock pains, either. But before I started taking medicine for it, (it's called neurontin or gabapentin,) I'd have attacks where I felt like my face was being stabbed or something. I guess maybe other people would describe it as an electric shock. I don't know. But now that I take medicine, I only get an ache in my jaw and teeth that gets better or worse. So I guess everyone's a little different.
I bet you've already tried this before, but does heat help at all? It helps me somewhat. Like microwave a damp washcloth until it's very warm. Or you can use one of those pillows they sell that have rice or something in them that you can microwave, that stays hot longer than a washcloth. Both of those things help me. There's someone here that said that icing the area helped, but that sounds really painful. I guess it's just what your body would respond to.
I hope you find something that helps! If the topamax never starts helping, you should ask your doctor if you should take a different medicine. Because I had been on it for migraines (probably caused by the trigeminal neuralgia) and when the migraines had stopped, the doctor told me to stop taking it. But your doctor knows better than I do! It's still worth an ask.

I do know a bit about trigeminal Neuralgia. Have you seen a good neurologist, not just an ENT?. In this months issue of Discover magazine there is a very well written ariticle about this condition. There is a surgery availiable which neurosurgeons do. The article will tell you in detain about this proceedure. Only a neurologist can really tell you if you are a candidate for it. I know from speaking to others that the pain is awful. don't give up and just accept the DX. Try to find that good physician that may be able to end the pain. There is hope for that. ginnie:hug: