[jerrysmom]

I was diagnosed with TN in Feb of this year. I had Gamma Knife surgery on March 1. I was pain free for about a month and now it is worse than it was. I have been reading the posts on this sight and you are all so supportive of each other. I have an appt with a new neurologist June 1. (changed to Kaiser Insurance). When I was diagnosed I was already on Gabapentin and Lamictal for bi-polar disorder so am reluctant to change these types of meds at all. Tried adding Topomax but could hardly complete a sentence or stand up straight so stopped taking that. I do not have the electric shock type pains, but more of an icepick in the ear and jaw type pain. I think that is b/c the TN is due to an injury to the front of my face on the left side. I don't know if the neurologist will be able to do much but am wondering if anyone has any suggestions.

I am thinking of all of you and sending you the best wishes.

Teresa

[Burntmarshmallow]

Hello Teresa . Injury to my face,mouth from auto accident is how I got my t.n. and I think a neuro will be able to help find a way to lower the pain for you. find way to control it that's what they are suppose to do anyways. I want to send a welcome to Neuro Talk to you also.
I know there is lots of info in the stickies above that is very helpful as well as the post threads in here. but most of all there are the greatest people here that are understanding and supportive. I know its kinda slow in here right now with school ending for year and summer on its way but I am sure others will come along shortly and reply.
My suggestion would be to keep seeing Neuro if you do not like how things are going you have the right for second opinion or to see another neuro most insurances covers that.
I wonder what area of face beside it being the left side? not that it makes any diference but just wondering? you mention ear have they ruled out O.N.??
mmkay I will stop with the questions. speaking of which that is what you should do have a list of questions and concerns when you go to next apt.
we will be keeping you in our thoughts and prayers and sending non stop positive thoughts to you Teresa.
Let us know how you are doing and how things go for you. any questions or anything ....we are here for you.
hope you have a very Low pain weekend and a shower of positive things on the 1st.
PEACE
BMW

[jerrysmom]

Thanks BMW for the thoughtful reply. Yea, ON was ruled out mostly b/c of the trauma to my face. I do not mind questions at all. I fell down the steps and put my face through drywall at the bottom of the steps. I must have had my head tilted more to the right. I have a numb place on my left cheekbone. The drywall thing happened last July. In November started having the left teeth pain thing. The dentist told me it was not dental. He has my long never ending loyalty for not pulling the teeth that I asked him to. I went to a neurosurgeon in February. The Dr suggested Gamma Knife. What I did not know was that he had just started doing Gamma Knife for TN that is not classic. He did the radiation through the front of my face since that was where the damaged nerve was. I have since read that destuctive procedures on TN that is not classic can do more harm than good. Now the pain is in the left teeth and has spread to my jaw and ear. I went to the neurologist yesterday and she pressed on the trigger point under my left cheekbone. Yeow. All she can do is meds for the pain. I am going to titrate down on the gabapentin and add Lyrica slowly. So now I will be on Gabapentin, Lamictal, Lyrica, Tramadol and Ambien for when I can't sleep b/c of the pain. Sorry for the long post but trying to explain this thing to people (like my boss and roommates and primary care doc.) is nearly impossible. It is nice to talk to people who will understand. Right now I am nauseated b/c of the pain. I just started Kaiser so that is why I have to go to new neuros. I have an appt. with a neurosurgeon in July. Thank you for listening to all this. It is so good to be able to vent.
I am so sorry for all you have gone through and all you are going through. . Thanks again for reading this long, boring post. Let me know how you are doing.
More Hugs, thoughts and prayers coming your way,
Teresa

[Burntmarshmallow]

thanks for the "up date" dont be sorry at all we are all in this together . It is good they ruled out O.N.
yes the neuro/doc will try to find the right combo and dose of meds that help the most. and of corse it takes body a bit to adjust to each med so dont be discouraged just give yourself time . one of my good pals just had a o.n. stimulator implanted for her O.N. she also has t.n. so thats why I asked about o.n.
July isnt that far away and by then you should be adjusted to the meds and know if they help or if it is more of a interuption ... to zomieish ,sleepy etc.... just dont give up.
sending low pain wishes to you.
PEACE
BMW

[thedspeth]

Teresa,

I too had a GK treatment for my TN which only gave me about 60 days of no pain. Like you, when the pain came back it was worse than before. I had another MRI done and read by a neurosurgeon versus my neurologist. My surgeon is the one who accurately found 2 arteries banging into my 'left' Tri. nerve. Although I was very apphrensive about having a hole drilled in my head etc. I'm extremely grateful to my surgeon who has given me a new outlook on life through 'drug-free' eyes! I hope you find a good combo of drugs which allow you to function normally with as few or no side effects. I completely understand how hard it is to adjust to new drugs. I wish you the best of luck during these painful times and pray for your full recovery.

Todd