I have had ATN for two years. I have been through about 8 different medications with varying success. I finally found a combination that is working (at least for now). I am taking Cymbalta + Methadone + Baclofen. I don't have to take anything else on top of this. At first it was hard to urinate among some other side effects, but they are leveling out. Don't get too discouraged at first with the side effects.
It doesn't take all the pain away all of the time, but this is the best I have found! It takes most of the pain away, most of the time : )
Give it a shot! I have had a great last couple months and I promised myself to share any successes I find with everyone. I hope you have a pain free day!
Until the effectiveness wears off and I get desperate again I am not pursuing any type of surgery or similar further measures.
Any questions? Please ask.
Thanks for posting your success! It was successes like your that helped me not give up hope when I was dealing with the constant burning and stabbing pains. Thank God we have so many options now with treatment and different drugs to try. I take prozac, baclofen, trileptal and also get monthly acupuncture treatments. I've had ATN for almost a year and a half and I'm now about 95% pain free. Hearing from other people in this group really gave me hope.
That is excellent, thank you for sharing what is working for you! I hope our combinations stay effective as long as possible!
Out of curiosity, what other drugs did you try before you found this combination?
I tried Gabapentin and Effexor but I couldn't tolerate the side effects. I wanted to try methadone but my doctor didn't want to prescribe a narcotic. I don't understand why some people can get pills they don't need and others who DO need them can't get them. It's frustrating.
Trileptal seems give me the most relief. Hopefully our drug combinations will continue to work!
Thanks for sharing. I have ATN or type 2, and always want to know what others have experienced with meds. Very happy to hear you have a med combo that is working. I did have gamma knife 4 years ago without any success. I am, considering MVD, but your post reminds me that I should not give up on the meds. Currently on Gralise, trileptal and nortriptyline. I have started on a low dose of methadone. My hope is to eliminate one of the other meds if the methadone helps. Keep us posted on how you are doing.
Megan - I have heard some doctors won't do the methadone. I didn't think it would help me as narcotics don't help much, but it did. It might be time to see another doctor if he is withholding something that could dramatically improve your quality of life.
Bob - Interesting the Gamma Knife didn't work. That is the direction I was heading. I was going to have it done by someone at NYU. Where did you have yours done? I haven't heard much evidence of it working on ATN, have you? Any evidence of MVD working on ATN either?
I will keep you updated, so far so good, started at the end of December and here we are coming up on halfway through March.
My pain management doctor said I should go on methadone or investigate a peripheral nerve stimulator, something he does,but not for TN. I consulted with 2 of the best neurosurgeons, Dr. Brown in New York, and Dr Kenneth Casey in Detroit, Michigan. Dr. Brown recommended MVD, as did Dr. Casey, who I saw for a second opinion. Some kind of PNS could be done after the MVD if necessary.
I had gamma knife at Mid Michigan Medical Center in Midland, Mich. That was 4 years ago and soon after I was diagnosed. I really thought it was an easy way out, so to speak, turns out it made things worse. I would be very cautious with having it for ATN, Brad, as it is one of the “destructive” procedures.
I had MVD surgery scheduled with Dr. Brown last October, but he cancelled it as he said I was not emotionally ready at that time. I plan on having it in the near future and feel comfortable with either Dr. Brown or Dr. Casey.
If I were you, I would schedule a consult with a neurosurgeon that does gamma knife as well as MVD surgery, and get input on which would be best for you. Having gamma knife first can make MVD more challenging if the gamma knife does not work.
I the meantime, methadone is giving me some relief, and I am grateful for a doctor that is comfortable with prescribing it. He is very careful with prescribing exact amounts of it over a given period of time.
Please keep me and others in this group informed about how things are going for you.
This is excellent information. So just to clarify, does Dr. Brown in New York do MVD and Gamma Knife?
Thank you kindly. I will keep you updated.
Dr. Brown does both MVD and gamma knife as well as other procedures for TN. He actually specializes in treating facial pain. There is a link to his web site under the recommended doctors on this web site.