ATN are many type. Face pain, Neck pain, Eye pain, Headache. Dental Phantom Pain. Please add a note if you get cured completely and pain free. Before you leave the board and enjoy your new life please leave a note so that other people can stay positive and optimistic. Please also state that what medication or treatment help you becoming Pain Free.
Swayam,how did you become 100% pain free from ATN? I’m very happy for you!
No, Eileen, I am recently diagnosed with ATN and have not started medication yet. I opened up this thread so that people can write their success stories. I saw there are many people who wrote/discuss about their pain but those are very old post. I am sure some of them must have got ride of pain partially or completely. I would request people to write their success stories before they leave this site so that rest of us get optimistic that it is curable.
I’m pain free, but not symptom free. I’ll take the symptom I have now over the pain I had 5 years ago any day. In 2013, after a year or two of meds including heavy stuff during a pregnancy, I finally got the right diagnosis. The dentist tried everything. It was TN. I was treated with radiation, cyber knife surgery. I’ve been pain free and on no meds since 2013. A year after the surgery, I started to feel the side effects of the surgery which is numbness on the left side of my face from my upper check down to my left side bottom lip. My tongue on that side is also a tad bit numb with little taste buds. It was hard to take at first, but compared to the alternative, I welcome the numbness. Neurologist says it may go away, it may not. Either way, it’s 100% better than the pain.
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Hi, I was diagnosed with TN almost two years ago and tried different natural therapies like Chiropractic and massage. The pain was becoming increasingly worse over time and after seeing a neurologist, I was just about to start with pain medication. However, I was referred to an acupuncturist in Melbourne Australia and I am currently pain free and have been for about 3 or 4 months now. Since I started treatment with him, the pain was minimised over time and I was only getting one or two shocks a day which was a dramatic reduction. But now over time and with weekly treatment, the pain has disappeared. I have no doubt it will still come and go every now and then when I get stressed or run down but this is a much better way of living!
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Hi FleaWright. Thank you for this post, which gives me hope. Gamma knife is one of the options I was given. Is that the same as the cyberknife surgery you had? I am trying to weigh every possible factor as I make my decision, so I have a couple of questions, if you don’t mind: 1) Did the procedure cause any slackness or sagging of the left side of your face? 2) Do you have any problems with chewing, swallowing or drooling due to the numbness?
Again, thank you for sharing!
Anyway I can help I don’t mind. I believe it is the same procedure. They make a mask to fit your face, map out the nerves and aim the robotic arm to that area to numb the nerve. It didn’t cause any sagging for me, it only feels like it. I can still chew and swallow like normal. I do however find myself wiping my mouth more when I eat it asking one if my kids if there’s something on my mouth because sometimes I don’t feel food there. Every now and then when laying down especially on that side, I might drool, but that doesn’t happen while I’m up and about. Also every now and then I might mix up words because of the numbness, but it’s not extreme and sometimes not even noticeable to the person I’m talking too. It’s more of a self conscious type of thing.
Good luck and I’d love to hear what you decide and how it goes for you.
The procedure looks scarier than it is. I would do it again if I had to.
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There IS hope. I can’t say I am completely cured but I would say 99%. That’s close enough! I occasionally have some slight discomfort when I chew, but I haven’t had a shock in over 2 months. After a horrible two years dealing with dentists who simply didn’t believe the amount of pain I was having, my primary care physician diagnosed me almost immediately with TN. The majority of the pain simply stopped relatively soon after I started carbamazepine. I am now on 400 mg twice a day. The dosage was increased very slowly. We will probably increase it again to get rid of the last of the pain, but I am in no hurry. I am also looking at alternative treatments just to maintain where I am. But, again, I’m just being proactive. No rush. The medication has been like a miracle for me. I wish it would work for everyone out there who has to deal with this. Good luck to you all. My heart goes out to you because I understand.
I am 25 and I’m about to start year 3 of living with ATN pain. It took me 4 months to get a diagnosis and 10 more to find a medication that helped without side effects that made me sicker. I finally found a dose of Nortriptyline that is good. I am now living with 30% daily pain. I ended up quiting several jobs and moving back to parents house. I still can’t work full time and have weekly bouts of bad breakthrough pain. I have come to accept that I may never be pain free again. I have tried chiropractors, herbs, meditation, and next I am going for acupuncture. I have discussed 2 surgeries with 2 neurosurgeons, and they did not recommend any surgical options at this time because I am young and not a good candidate. So life in pain goes on. I hope you find your miracle cure, but I warn you to prepare yourself if you can’t find one. Life can still be good.
Thank you all for sharing.
I have been with TN for over a decade. Carbamazepine is a miracle drug for me from the beginning.
I had the MVD operation in Portland a year ago. made difference of about 20%, not good enough.
Lately I have switched to OXcarbazopene 150 mg 4 times a day religiously, my pain is under control by 95%. This is the best I have had so far. I think the trick is be consistent with the med, and avoid caffeine.
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