I have been just diagnosed with atypical trigeminal neuralgia/neuropathy (dull, boring, burning pain 24/7) and am currently taking Gabapenting & Venlafaxine (anti-depressant). I have been suffering from it for many year but very mild case but recently I had my back uper left teeth pulled out, thinking that will solve my problem. What a shock realizing that all this time it was nerve related and not teeth related. Had I known I would never NEVER had my teeth pulled out.
I was wondering if there is anybody out there knowing of any support group in Denver CO area.
And also if anybody had a more invasive procedure after being diagnosed for short time?
What are the best non-invasive treatments for ATN from your experience?
And what are the best invasive treatments for ATN from your experience?
Does anybody outthere have suffered from ATN and was cured?
No one knew i had nerve pain including myself so they kept pulling teeth which made me worse and worse. sorry to hear u have gone through the same thing. To make it even more complicated i have compressions on both sides...but i'm scared to jump into surgery..from everything ive read the only option for atn is medication sadly to say. I wake up everyday hoping for a miracle. Is your combo giving you pain relief? i'm just on antidepressents
My combo is giving me very short lived relief, sadly to say! I am sorry you are in pain! Let's hope & pray for miracle! What is compressions on both sides? jstagrl29 said:
No one knew i had nerve pain including myself so they kept pulling teeth which made me worse and worse. sorry to hear u have gone through the same thing. To make it even more complicated i have compressions on both sides...but i'm scared to jump into surgery..from everything ive read the only option for atn is medication sadly to say. I wake up everyday hoping for a miracle. Is your combo giving you pain relief? i'm just on antidepressents
I had teeth pulled, root canals, bridges put in only to find it is ATN. Seems same story with so many. Dentist not knowing is an excuse! They have to learn about face nerves! This is why we need to make awareness. I’m on carbazapine (Trileptal) 300 and cymbalta 20 low dose. It helps. Doc moves dose up and I’m like a zombie. What’s weird is I can hurt for days, then it stops a day? I wish I knew why but I really suspect barometric pressure as I’m keeping a log. I’ve suffered as ever since moving to Texas from Florida. Only had a couple attacks in Florida.
Daryla do you have atypical trigeminal neuralgin type I or the type II the dull, boring, always present one?
I am so sorry about you pain! Have you ever thought about more invasive treatment?
Jane
Daryla said:
I had teeth pulled, root canals, bridges put in only to find it is ATN. Seems same story with so many. Dentist not knowing is an excuse! They have to learn about face nerves! This is why we need to make awareness. I'm on carbazapine (Trileptal) 300 and cymbalta 20 low dose. It helps. Doc moves dose up and I'm like a zombie. What's weird is I can hurt for days, then it stops a day? I wish I knew why but I really suspect barometric pressure as I'm keeping a log. I've suffered as ever since moving to Texas from Florida. Only had a couple attacks in Florida.
compressions on the trigeminal nerves...which for tn1 patients if the do mvd surgery to remove the compression off the nerve they can be painfree..its not so common for tn2 to get pain relief from a mvd and most tn2 patients don't have compressions so i could possibly get relief from the pain if i go through a mvd but since my pain is type 2 its less likely ..i'm not saying i would never do the surgery but i'm scared to jump into brain surgery when the chances for me are not high. But there have been type 2 patients that have found relief. its a coin toss really i guess it depends how desperate you are to throw the coin in the air.
Hi Linda
Sorry to hear you are suffering so, but glad you joined this group. I have bilateral ATN. I also had the burning one pressure for years, but thought it was related to another condition. It was not until January of 2012 that it became severe and constant, and then I also started to experience the shocks of pain also. I did not get an official diagnosis until June 2012, and have been taking Neurontin, which really helped with the shocks of pain, and did reduce the severity of the burning, but it never stopped that completely.
I had MVD, which is the most invasive surgery, on January 25, 2013. My surgery went extremely well, and I have not had any TN pain on that side since then. I will have the surgery on the other side in the summer. Although it may seem like a short time from my diagnosis to have surgery, it was the best choice for me. I was on the highest dose of Gabapentin I can tolerate, and still had constant pain. I did not want to try a list of other drugs ( I am allergic to Tegretol) just to postpone the inevitable surgery. I chose not to try any other procedures because my own research found the outcomes of those not to be anywhere as good as MVD, and that some of them actually can cause you to not be a good candidate for MVD in the future.
If you do decide to get a surgical consult, please be sure to check the doctors page on this site and see if there is one in your area. This type of surgery requires an expert. I live in Georgia, but had my surgery in NY by a leading expert.
My Neuro said a few more meds to try, then a time release med? After that, if nothing helps, MVD or radio frequency? I feel exactly like you with type 2 form! Sometimes there is a compression, they can’t see until in.
I’m worse in winter months.