ATFP and running out of options
 

I have finished my 4th prescribed medicine by the neurologist for what has has been diagnosed as atypical facial pain caused by dental work a few years ago. The neurologist I am seeing is very good and kind, but he also is so focused on a neuropathic issue that I am getting frustrated. None of the medicines(trileptal, lyrica, baclofen, tramodol) have made an ounce of difference. He wantsto prescirbe a medicine called Savella which has only been out for 8 months in the US and is for fibromyalgia, but he has seen it work for ATFP patients. However, the maximum dose in trials was set to 100Mg and he wants me to do 400MG. I have been trying acupuncture which works temporarlily. I do not qualify for any neurosurgical approach because the neurologist does not really know what I have and so the ATFP diagnosis. I do not have ATN or TN. Just variable throbbing in my upper molars and on left and right sides. My dentist who is also very good is frustrated because he believes it is an unresolved dental issue and he is tired of seeing me suffer in pain. I do have vague dental symptoms but they are dental symptoms nonetheless. I did have a root canal in the area in question which did not help but my dentist says root canals do not always work and other approaches may be necessary. I even saw an ENT who said I have some chronis sinus issues(although milder in nature) but it would be unlikely they would be causing my discomfort. Basically I do not know who to believe and it has been two years of pain. If I could convince my self to live with it maybe that would be the best option, but the pain can be unrelenting at times. Any opinions would be appreciated!

Alex

Hello again Wave
Has the neuro doctor you see, offered anything else ? I understand the Neuro not knowing what type of pain it really is if it dose not fit into any one category but face pain IS face PAIN . and there are nerve blocks and other things out there.
Perhaps you could mention that and maybe ask about neuro stimulation. It is not anything major it is same day surgery and is getting more popular in recent years. you are able to try it before they do surgery so you know if it will help . Not so with M.V.D. or Gamma .
Please know ya got a t.n. pal over on the other coast thinking of you if I can help let me know.
low pain and good weekend wishes to you Alex. I really hope you get some good treatment for this soon!
PEACE
BMW

Wavegeek, a lot of my early episodes of TN sound like what you're dealing with. Sadly, I had a lot of root canals and lost a lot of the root canaled teeth because the pain kept on being unrelenting. I also took alot of antibiotics for suspected sinus infections and had several CT scans which showed no sinus issues. Finally, I was diagnosed with TN, types 1 and 2. I have responded to some meds, but I had to come off of them due to side effects. I hear your frustration, but one of the best meds for me was an antidepressant and they are known to work well for nerve types of pain so trying Savella doesn't sound off. Did the doctor tell you that all antidepressants need a few weeks to build up to a theraputic level and that you need to give them time? I do hope you'll find some relief as the unrelenting pain is really hard to handle.

DO NOT TAKE ANY TEETH OUT!!! is all i can say. I was so stupid and took my last molar out ( had 2 root canals already) because i could swear the pain was coming from the tooth. It was also percussion sensitive... i couldnt chew on it.
Dentist said nothing is wrong with the tooth but i pressure him to do it anyways. Boy was i wrong !!!!! Pain is still there and even more than before.

and of course.... they got the tooth out and nothing was wrong with it.

Pain makes you do stupid things... i am also not sure what to do next. no pain med worked so far. I just sometimes want to drive off the highway or take some pills because i cannot imagine living in pain forever. i am 28 !

Hi Alex,

Don't feel like you're running out of options. I'm actually on the same boat as you are. And we actually have a similar story. Years ago, i had dental work done, a repeat of the dental work was done a year later by the military when I enlisted and after that my pain started. I also just have variable throbbing pain and its not constant nor is it electrical shocks. But i have been formally diagnosed quite a few times with TN/ATN.

Hang in there, it takes multiple/different or a combination of medications to finally work with you. I'm actually just in the beginng stages.Buti have hope. I started with Tegretol (Carbamazepine) the side effects - i couldn't tolerate so i had to get off of that, im taking Topomax now. going higher and higher in dosage its not working, i'm almost at a therapeutic level now but i dont believe its working. I"m approaching an appt to see my neurologist on thursday and i will recommend to see if i can take an antidepressant which i've searched aroudn that it helps, and i've heard lyrica helps too. But read around in the forums... don't lose hope my friend... you and i are very much similar... i'm here for ya..

Jenna