J Jane...do you mind say what meds you are on now? How often do you see your doc? I see my neuro every three to four months, but sometimes barely make it.
I REALLY hate this...I have several health problems....this is the hardest.

Hi Vowel Lady,

I am on Amitriptyline. I have been very, very lucky that this med has worked so well for me. I have had my ups and downs and have had to increase it overall as my ATN is more widespread than it was.

I still get flare ups...I am in the middle of one now. The weather and my cycle really affect my TN.

I have had no help so far from Drs. My family Dr is very willing to help me but doesn't know anything about TN. I asked her for the Amitriptyline because it worked for me the first time I had ATN eight years ago.

Two MRI's, both clear. Met with a neuro surgeon who told me I have "neuropathy" not "neuralgia" (whatever that means!) and has sent me on to another neurologist with a three month wait time for appointments! Still waiting for that in Augest.

What medication are you on? I know this started for you with a dental procedure right? How widespread is your facial pain? And are you in a lot of pain?

I know we have spoken before but its been awhile.

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