Hi, I'm new here. I have been having symptoms of TN since 1998. It took about three years and about 5 different Doctors before someone recogized my symptoms, which my Neuro said were text book. I have been seeing him since and have been on Neurotin (1600mgs 4xaday)I also have tried a number of drugs along with the neurotin, I took depakote for several years and put up with the sleepiness and weight gain as long as I could, anyway, I have been on Neurontin only for the past 4 years and have been doing ok, no really bad pain. The last few months I have been having breakthrough pain which is horrendous. Burning and stabbing so badly I can't move my face or it gets worse, can't swallow. My neuro won't give me anything stronger than Tramadol and recommended that I go to a pain managment doctor. I have called 4 doctors 3 have told me they can't help me and one hasn't called back yet. Does anyone know of a pain Dr. in the Cincinnati area that deals with trigeminal neuralgia? Please email me if you know anyone. Thanks

Welcome to NeuroTalk!

I don't have TN but my friend in Colorado does so I have an idea of what you're dealing with. I'm hoping someone will see your post and have a good referral for a doctor in your area.

Have you tried web searches for neurologists or pain doctors in your area who would treat TN?

Anyway, I hope you'll find a really good one soon. Take care.

Thanks for your reply ewizabeth, yes I have spent countless hours on my insurance website and google to find docs in my area. I have called the office of 4 of them. You can't just call and make an appt. or talk to a person you have to leave a message and then they call back and I'm at work, then I call back and it starts all over. Anyway 3 of the docs said they can't do anything for me, without even seeing me and I'm still waiting for the 4th to call back, it's been 3 days! I can't believe these people are supposed to be compassionate and caring. Sorry I am in so much pain and so stressed out over this.

I have some kind of ATN (they think). I get pain at a sustained 10+ for days. Its most likely a neuropathy from my MS. Anyway, I'm a big believer in meditation, relaxation and biofeedback. I use them to manage my pain with migraines and my facial pain. That's exactly what pain management clinics do. Try contacting "alternative" therapists who might be listed under things like "biofeedback training" and "relaxation." In So Cal these tend to be licensed therapists, psychologists, and counselors, so insurance coverage, etc. is different.

Just thought I'd suggest it, though.

Thanks, Catch for your advice. I don't know if insurance will cover that or not. I don't really know about bio-feedback, but I do try to visualize a warm sun on the side of my face that is hurting, it helps some but at that point I am in such a panic that I can barely think. Right now I have been pain free for a few days and it is a relief, I can actually get some work done around my house. I need to have some dental work done though and I just keep putting it off, because I am afraid of the pain I always get after any work I have done. It's just so frustrating, I went to see my primary care Dr. on Thurs. and he won't give me anything. Luckily I am not in pain right now. He just gave me a list of Pain Management Docs and shook my hand and said good luck! I said can you give me something for when the pain comes back and he said you have a specialist for that. I said no I don't. and he just walked out of the room. I felt hurt and betrayed and humiliated. I am so tired of feeling like I am a criminal just because I want to have some quality of life! Do I have to go to another state to get some help! Sorry about the rant I am just at the end of my rope. I can't go to the ER everytime I have the severe pain. I only want to have a Doc who will give me something for the breakthough pain. Is that too much to ask?

Go to the pain clinic. It proves to the doc you have pain. Docs and ER nurses see a lot of people come through the ER for "pain" its easy for someone to say they are in pain, and the nurses know that. Unfortunately, for people with REAL pain, the docs assume you're probably a junkie first. If you work with the pain clinic, the docs will see how serious you are, and then if you still need the meds, they will see you truly need them for breakthrough pain.

I have been trying to go to a pain clinic for over a month now. I call and leave a message and after I finally get to talk to someone and have my records faxed over from my neuro, the clinic will call back and say they can't help me. That is why my first post asked for a pain doc in my area, no one wants to deal with TN. I never have a problem at the ER, since I seldom go there for pain relief, I usually just suffer through until I go into remission. I am tired of suffering, because I am not the only one to do so, my family suffers, also. My children are 16 and 20 now and they have had to deal with this for 10 years. I know it has had an effect on my daughter, because I couldn't be there for alot of her activities, conferences, broken promises because I was in too much pain, or hadn't had much sleep for a week to take her to something.
All I want is just a chance to go to a pain doc, talk to them and see if they will help me, not just reject me out of hand. I know alot of people go to the ER and pain docs just for drugs, but my disorder is well documented for at least the last 7 or so years. Thanks for the hug.