Does anyone else have Trigeminal Neuralgia?

[Violet_Crumble]

I've been told sometimes it can take ages to diagnose, so I've been lucky that my GP worked out what it was within two weeks of it first hitting me. My doctor also told me it's a pretty rare condition, and I'm his first patient in 20 years to have it, but when I returned to work yesterday, I found out one of my colleagues is married to someone with TN. So now I'm wondering if maybe it's not as rare as I've been told. Not like I ever felt like I'd won the lottery or anything, in fact since I've been told I have to have an MRI to rule out the things TN can sometimes be a symptom of, like MS or tumours, I'm a bit scared of what's happening...

Violet...

[mr blur]

1. I have it from time to time as part of my MS,

but as I understand it it's not that rare at all. It DOESN'T mean that you have MS, for example.
The main thing is not to panic and to find out what's going on. Are you in the US or the UK - or, indeed, somewhere else?

Couple of links:
http://www.tna-support.org/
http://www.tna.org.uk/

[Violet_Crumble]

2. I'm in Australia...

My doc said it could have been caused by the really bad sinus I had a few weeks ago, which makes sense to me seeing it's all happened on the left side of my face. I'm happier now I'm on some medication at really low doses and the pain's died down pretty much, and I'm not feeling so doomy and gloomy anymore. Y'know, I also got told that it's uncommon in people under 50 but I suspect that's probably wrong too...

Thanks for the links, especially the UK one..

Violet...

[Susang]

3. I've had it for a little over a year now

The result of a herpes zoster infection of the trigeminal nerve that was triggered by a severe sinus infection that backed up into my ear canal. At first I thought I had a severe tooth infection or something and visited my dentist. Ended up needing a bunch of work done anyway, but unfortunately, it didn't do anything for my nerve pain and may have even aggravated it a bit.


Horrible pain, isn't it? I've been helped by taking Valtrex for the herpes zoster and Topamax for the neuralgia. I also had to change the way I sleep, since it turns out I was grinding my teeth at night and making things even worse!

Try not to worry too much, it really doesn't mean you have MS or a tumor. It's not a rare condition at all, just do a Google search on it and you'll see what I'm talking about. I found plenty of information and support on the web and I'm proof that it actually can get much better. At this point, it only hurts me about once a day and I really don't notice it that much at all.

Here's a link to check out that has a lot of support info: http://www.tna-support.org/
Another one, since I think you're in Australia (if I remember correctly): http://www.tnaaustralia.org.au/

Good luck! Hope it gets better for you. Chronic pains sucks ass. :-(

[Violet_Crumble]

4. Thanks, susang...

I'm feeling heaps better about it now, and I'm hoping I'll also be proof that it can get much better. My MRI was normal and now after nearly a month of pain, it's finally gone and my doctor has got me to cut back on the Epilim. I've only been pain-free for a few days now but I'm really hoping I'll be lucky and I'll go for years before it hits again...


Cheers...

Violet...

[Susang]

5. Hey, that's great!

I bet it was a huge relief getting a clear MRI and when the pain finally went away. Glad to hear you're feeling better! :toast:

[flamingyouth]

6. I was just diagnosed with it this week.

It does answer a lot of questions, I have to say. I've had horrible pain in my head and face for years now, which a car accident recently exacerbated.

I had two head injuries when I was younger and have a lot of ongoing neck problems.