I was recently diagnosed with TN. Boo Hiss to that, after reading lots of information I thought it was something you normally get later in life :(
I notice a lot of posts up here are from America and I don't think we are on the same meds over here.
I've been lucky enough to see a nurologist within a few weeks and was on meds straight away called Eplim, he has now changed me over to Pregabalin which seems to be working.
MRI showed nothing which is good news I guess I was extremely worried about that.
Is there any other TN suffers in Australia floating around so I can see what my options are?
This site is both brilliant and scary at the same time :)
This site is a bit closer to home for u…a great couple of women manage the site and have truly saved me this past Mar/Apr and May when i was new to this monster tn.
Many of the drugs could be the same but they have different names in other countries. Why that is, I don’t know. It took me over two months to get in to see a neurologist here in the states and I only got in then because I was so persistent! (I live in a very rural area)
I think our Heath system is so very different to the American system. I also have a very pushy nursing back ground mother who tells me what i should be asking so I push and push and get my way.
I’m 10 days without a HUGE attack and glad, I agree with everyone on here about being anxious waiting for the next one and it really stopped me in my tracks as far as lifestyle goes thats for sure but I am soildering on.
Have a fantastic workplace who have let me cut back and work from home so that has taken the pressure off.
Is there any other Bells Palsy suffers on this site as well??? I have had it twice so they are thinking there might be a ling, well at least in my case it seems likely.
I’m a QLD’er in Australia - happy to chat with you about anything you like, I’ve been living with TN for a long time now.
Excuse my short post - I’m just researching the results from an abdominal CT scan I had done today. They have to give me my results in person because they don’t deliver to rural doctors, though I only live 45 minutes away.
But write me if you’d like and I am also on facebook as well, the TN NZ site that Erin mentioned is great and you can also get in touch with TN Association Australia as well.
They can help you get a copy of the book, that is kind of a TN sufferers bible - it’s called “Striking Back” it’s a great read.
I have not tried Epilem - did it help you at all? And I believe that Pregabalin is also known as Lyrica. Pregabalin would be its generic name.
Please write me, and if I can answer any questions for you - I will definitely try to!
Cheers ~ Hoping you continue to have many pain free days!
Hi Shannon,
Actually I was hoping my recent MRI showed a compression. Then I would not hesitate to have surgery again. Now I am considering surgery again because my pain has been increasing. I had an MVD about 17 mths ago despite having a negative MRI. The surgeon found a vein compressing my nerve. Surgery decreased my pain substantially. After reading several posts here, you will find negative MRIs aren’t unusual. My surgeon’s words were I don’t give credence to the MRIs. He felt positively that he would find a compression based on my history.
So if your pain gets worse or if you want to be prepared should it get worse, you may want to consult a surgeon. But do your own research and ask your neuro. I personally wished my MRI had shown a compression and I would not have had to endure the pain I did. And if we can be of help, please ask.
Liz
wow Liz I was under the impression that the MRI was to just check for Tumour and MS so hence me being happy about not showing anything.
I will have to quiz my Nurologist when I see him next.
Yep Kerry it’s Lyrica, my GP put me on the Epilem to start with I didn’t get much relief and it was only when I was at 1000mg that it started to help but then I was still getting attacks just around the 2 mark in the pain scale instead of 8 to 10.
This is my first just Lyrica day, i hae been on the change over for 9 day so fingers crossed I stay pain free.
That book sounds really interesting I might have to look into it.
I am n0t on facebook at the moment so haven’t had a chance to have a look at the page yet but I might join back up.
Thanks Kerry, love my horses as well, couldn’t ride for awhile there was to scared to have an attack, I have found now that the weather is warming up its better and I also ride with a neck warmer ( can get them from hiking shops ) to shop the wind on my face as it seems to be when i breath in cold air that I get the worst attacks.
