Hi Jane. I take a medication very similar to yours called Desipramine. I asked for it because I heard it causes less weight gain. In addition, I use a compounded cream on the injured side of my face...or where the ATN is (right side). I have a lot of pain in and around my right ear.

I was doing well until very recently. I've had some very bad breakthrough pain and it seems to have spread further across my face...into my nose and cheek, etc. I had a couple of horrid days that I think were caused by terrible weather. And, I have a sinus infection that is actually rather minor, but it set off bad TN pain.

I spoke with the compounding pharmacist this morning. I use three meds in the compounding cream: Gabapentin, Lidocaine and Capsaicin. They normally work very well. But, I might talk with the doctor about adding a small amount of an anti-inflammatory due to the recent breakthrough pain.

Interesting that the weather is bothering you as well. So frustrating that its been so difficult and then there has been so many delays for you to get a specialist. It wasn't easy for me either. Even neuros don't always know about this stuff. Kudos to your family physician for helping you out with a good med.

I've been enjoying your posts. Keep in touch PLEASE. This is AWFUL!

Wishing you many good days!!!!

Yeah, weather is my biggest issue now. I am in Ontario, Canada and this past winter was horrible. I went through a rough couple of months and my ATN went bilateral and is causing some symptoms in the top branch, which I never had before. Now the rain or humid, stormy days always bring a flare up.

I wish it would all just go away...It is very frustrating and frightening to deal with this ever-morphing pain right?! I hope that you are able to get yours under control again.

I see the specialist in a month and am not even holding out much hope for the appointment. All I want at this point is somebody who is on board with me and can manage medication for me. Someone that knows even a little about it. You know, I haven't even really received a proper diagnosis I guess. I know that it wasn't caused by injury. Other than that I am on my own with it for now.

Keep me updated on your situation

Are you on livingwithtn too? What is your name on there? Mine is justjane37. Would love to connect with you on there as well.
Thanks

I'm on there. Was there a LOT at the beginning. Now, I probably go once a week. It is a VERY good site. Would have gone nuts without it! I'll pm you my name from there. A long time ago I added that site to the sticky's here.

Also, just heard of a product some folks with TN painthat radiates to or from the mouth use at times:

Blistex Kanka Soft Brush Tooth/Mouth Pain Gel, Professional Strength

It seems to be a brush with lidocaine on it that can be used within the mouth.
Available at Amazon. I very rarely have that type of pain, but ordered one to have as part of my arsenal.

Thanks. I friend requested you. Good to know about that product. I am the same with all of the little things that help. I have a basket in my medicine cabinet full of things I have tried.
I do get terrible tooth pain sometimes so it may help me. I also use Emugel sometimes on my cheek. I have tried lots of OTC products. I get so desperate when I'm in pain that I would try anything!
TTYS

I've been living with whatever this is for over a year, but from reading a lot of posts on this site, I feel like I fit right in. I started off with a terrible headache that wouldn't go away, and a tooth ache. I went to Kaiser for the headache, but they sent me to my dentist. I went to my dentist and she sent me back. I went back and forth from the neurologist, to the dentist, then to the root canal doctor, back to the neuro. It's never ending. The MRI didn't show anything, the root canal hasn't stopped anything, they want me to have another one, and I'm on meds every day for 14 months now. My face stings and burns all the time, but at least all the other horrible stuff seems to have subsided. However, having read through a lot of your posts, reliving all the horrible first months with this, I'm worried about the future.

No one that has treated me wants to label me a TN patient. Your doctors seemed to know what you had right away. I've been thinking that I was overreacting or making things up, but everything I'm reading is me.

Welcome workingmom.

Hi workingmom,

I can relate to your story. Don't have any more dental work done unless there is clear physical evidence of a problem. I am two years in with this and am still convinced sometimes that something is wrong with my teeth. Well, I was just at the dentist again and my teeth are very healthy. Pretty messed up considering I feel like I have a mouth full of rotten teeth.

No one knows what to do with us. Keep looking for help and asking questions until someone listens. It took me a year and a half to find a neuro that understands this beast. I cried in his office because someone was finally listening, believing and understanding.

I have bilateral ATN. I have had 2 MRI/MRAs with nothing showing. I still don't have a proper diagnosis. Been told I have AO, AFP, ATN and MS several times. All tests clear. I hope that you are finding relief with your medication. Keep learning, reading and asking questions. Knowledge is power and we need to be our own best advocates with this!

Hiis exactly what happened to me.....my tooth was killing me. I had a cap and 2 root canals and then my dentist injected novacaine and that did nothing. He said it was neuolgical....I have since been diagnosed with ATN... and Im on 600mg of Gabapentin which makes me stupid but it seems to help the pain.My dr wants to inject Botix and I was wonderingif anyone has had this experience!

Hi Susie,
Sorry you are in such pain, but if you relay your whole story here:

http://neurotalk.psychcentral.com/forum89.html

In the Dentistry Forum, I know there are people who can help you. Being tooth pain they are better equipped to answer your questions.
Good luck, and a belated Welcome.

Dave.