trigiminal neuralgia

[rntiggergirl]

Hi
I have just been diagnosed with trigiminal neuralgia. I was started on Neurontin yesterday. I understand this can happen after AN surgery. Does anyone else have this diagnosis and treatment that is helping them.

Thanks for the help, the pain is difficult to deal with
Cheryl 

[debora]

Cheryl,

I have never heard of it but my deepest sympathy to you. I hope they can find something to help with the pain. 
Hugs to you.    Deb

[russ]

Hi
  I had thought removal of the AN usually elimininated TN, but the 5th cranial nerve may have been near where the tumor was or in the path of approach.
  Seems I read GK is often used to treat TN?
  Maybe check 'irsa' and have a look around the web site.
  Best wishes in this. I understand it can be the worst of pain!
  Russ

[Janet]

Cheryl,

I hope you get some relief soon from your difficult situation.  I started on Neurontin after experiencing similar nerve pain only it was towards the back of my head. It was pain that lastest around 20 min and I could hardly breathe or move while I was having it. It was triggered by movement, sneezing or who knows what. It dictated almost everything I could do.  I eventually switched to Trileptal because I had trouble sleeping while on Neurontin but it is a similar anti-seizure medication. I also take Indomethicin (anti-inflammatory). As long as I keep taking the medication, I do not have any of the severe headaches.  I hope this is helpful to you. I found this site extremely helpful when searching for answers and help. The common advice was to keep pushing for a plan that fits your individual situation.  Best wishes & prayers,   Janet

[jbodington]

I had an AN reomoved in 86, scar tissue casued TN 11 years later and another surgery was necessary to fix it.  I am now pain and drug free.  Good luck.

[Captain Deb]

j-bod, could you elaborate on the second surgery a little?
Thanks
Capt Deb

[matti]

I would also like to hear about the second surgery. My surgeons feel that scar tissue may be causing alot of my problems and can see it on my MRI. I did not start developing problems until 6 years post op.  I understand that scar tissue breaks down and constantly rebuilds itself or at least that's what my docs are telling me.

I am happy to hear that you are pain and drug free. YEAH!!!!!

cheryl

[jbodington]

OK, for more on the surgery see the new topic I started.  Sorry to send you there, but I thought it would be sueful to have a topic that starts with a success story.