Well I went to my Neurologist on Wed. I was very naive thinking they would find something on my MRI or in all the blood work they did and tell me this is what is causing all the pain and this is what we can do to fix it. It didn’t happen! Don’t get me wrong, I am very pleased all the tests came out negative. I think in the back of my mind I knew there is no cause or reason for this TN. I cried. I hate crying in front of people but I couldn’t hold back the tears. I also asked him about Atypical Facial Pain (ATFP). From what I’ve read about TN the pain is like an electrical shock or fire cracker going off in your face. My pain is different. It’s like a stabbing pain in the right side of my face and the pain can last up to six hours. To my Neurologist it’s all the same. It has to do with the Trigeminal Nerve and is treated the same. If I still have a lot of pain I can take more Neurotin. I’m already on 2700mg. Or I can try other meds. I tried Topamax (not sure how to spell it) but I didn’t like it. The side effects were horrible. In other words I was told to take my meds. Increase them if I need to and when the pain comes and it does, SUCK IT UP! Sorry to be so negative. I feeling sorry for myself and I need to work on that and get over it.
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Dear Sasha ~ So sorry to hear you are doing poorly! I have just begun this journey with TN and it\'s scares the heck out of me. The only people I know who have are the ones who have responed here. I am getting relief on a medication called Lyrica. When my doctor suggested it he talked about shingles and the aftermath of facial pain oftentimes TN. I told him my husband had had shingles many years ago and I knew the symptoms and what it looked like and I knew I didn\'t have them. He still examimed me looking for the blisters. Do doctors think we are totally clueless?!?! Anyway he, along with an intern felt I needed another med and put me on amitriptyline which just made me sleep all the time. So that is not an option. This girl has to go to work! Next week is my first appointment w/a neurologist. I am a bit nervous; having read your comments and the things on the internet. My pain also lasts for incredible amounts of time not just for a minute. And it is an all consuming pain that I have never experienced before. I get migraines and used to think that was the worse pain possible; now I think that is minor compared to this! Sasha, I pray for you ~ that the Lord wraps you in his healing warmth and gives you rest and peace of mind. May He also lead the doctors who are caring for you to understand what is truely going on and give you compassionate and loving care. Until we speak again, take care my dear sister in Christ! Dian
Hi gals,
My neurologist mentioned two sorts of shingles. One is visible on the skin, but the other type is in the nerve ganglia. The damage is done without you knowing it, and one of the results can be TN. It\'s a strange explanation, but he\'s supposed to be the expert so I believe him.
Lots of big hugs for both of you. Sasha, thank you for your responce to my question. I\'ll give it a try with the Ibuprophen.
Both of you are being prayed for.
xxOx
C
I feel for you. I have had nonstop TN pain for two weeks now. THe only thing more painful, and it may not be, is kidny stones. It\'s all relitive. But TN is the worst experience I have ever gone through and even the doctors do not understand the level it can reach. As for the tests, all my blood tests are normal. My MRI shows a (what I call mothball) right at the 5th nerve which causes the TN. Unfortunatly it is right at the pons in the center of my brain and nothing can be done. It\'s is the world we live in. My heart goes out to you because I know 100% what your going through. To say \"hang in there\" just doesn\'t cut it. God bless you and may you find peace. I have three injections of delotum yesterday and it helped but did not completely take the pain away and delotom is stronger than morphine. Our lives realy suck with this stuff as i am sure you agree.
Take care and I am with you!!!!
Mike
you know the more I read from others, I believe that atypical face pain may be my cause for pain as well. My pain lasts for several hrs too. and then my face feels all crawly and numb for several days then its gone. then returns whenever im least expected and think that its not coming back and maybe im fine. its good to hear each others stories because unlike doctors, we can almost diognoss ourselves. sorry to hear about your pain I too know to well what you are going though.