My name is Kerry. I developed ATN after a failed bottom jaw surgery. I have a constant horrific sting/burn among my bottom lip. We are talking the type of pain that sometimes I wish he had just killed both the mental nerves. This is bilateral pain. I’m on a lot of meds and they want to get rid of my tegretol due to high enzyme levels in my liver. I’m down to 25 mg. I need this because it numbs up my lip a little without it my lip feels and the pain is unbearable. I get really moody when I hurt. My surgeon won’t talk to me or see me. He does not want to admit to a failure but enough on him. I finally got a name for my condition last year which is great news. I’m in need to someone to talk to when this gets bad. I need help in finding right meds.
I’m on Elavil 30 mg
I’m on Gabapentin 1,800 mg
I’m on Baclofen 60 mg
I’m on Tegretol 25 mg
If you have ATN what meds help you? Is there always someone to talk to?
Hey there - I’m sorry you have to go through this like the rest of us.
I have trigeminal neuropathy from dental work. I’ve tried all the meds you have listed and the only thing that ended up helping me was nortriptyline. The tricyclic antidepressants deal with neuropathic-type pain better than those other meds, typically. How long have you been on Elavil (a TCA like nortriptyline, however with historically worse side effects). It took a month or so for nortriptyline to work for me.
Hi Kerry,
Very sorry to hear about your condition. Have you tried any topicals? You could get a topical carbamazepine cream made by a compounding pharmacy. Other possibilities include an anaethestic such as lidocaine, doxepin, gabapentin or others made into topicals, or a mixture of a few. I currently use a lidocaine and capsaicin mix. It doesn’t last too long, but helps me get through the day.
Liz,
Did your pain spread or stay in the same location? And how much nortriptyline are you taking? Just curious as I believe I have either ATN or trigeminal neuropathy after a dental extraction. I also take nortriptyline 40 mgs and 600 mugs of gabapentin. I have adequate relief that allows me to still go on with work and life, but I don’t have pain free days.
Thanks!
Melanie
My pain spreads and changes all the time. I am currently not on any medication, but I was all the way up to 75 mg at one point. I was also on gabapentin, which in hindsight, I don’t think helped. So if you have pain following an injury to the nerve, then technically you have trigeminal neuropathy. It’s helpful to know to treat it as what it is: neuropathic pain. A lot of people (like I did) mistakenly go through the drugs used specifically for trigeminal neuralgia.
Hi, I’m sorry for what you are going through. I have neuropathic tooth pain from a dental injury. 2 root canals and those teeth extracted.
I have been in klonipin for 3 yrs, I just started Bachlofen. What helps me Is a compound with lidocaine, Amytriptline and clonidine. I rub it in my sore teeth. Also my bite is off so I wear a mouthpiece at night. I hope you get relief. It’s exchausting with daily pain.
thank you every one! Dentists and dental surgeons need to go in depth. I have no bottom back teeth so the bachofen helps. The elavil changes the pain but it’s a numbing freezer burn. My surgeon never wanted anyone to see what happened. He did things to prevent an MRI. I got one done and hopefully they can fix it. It’s that bottom lip and that severe sting. It’s constant. How do you do it?
Glamarella, You poor girl. Any pain is horrific, I sympathise I have been caring for my mother for years and she has been to state of screaming for hours on end. Ive had to close the windows and doors its been so bad, the poor thing. so being a nurse I started experimenting as she has tried everything and all it seemed to do was ruin her thinking, drive and will, it made her tired. So I decided to wean her off everything VERY slowly then start her back on one med e.g.Tegretol, it worked for a while so I switched it to Epilim, that held her for a while too, so then I bought some GABA from USA, do not confuse this with Gabapentin, completely different. The GABA increased the affects of the Epilim without causing side effects that a double dose would cause, then I started her on a high dose of HiVita, which is vitamins, minerals, aminos and herbs and this is her magic formula, when the pain begins to return I up her vitamins and it goes. So she has her mental ability, energy and she is 100% pain free. For over 6 months now, and that has never been this way for a decade in the past.
I’m sorry to hear about your mom. I know it must grieves you when her screaming happened. I don’t know how you could do it. I’m very glad you were able to help her. I’ll have to check out the vitamins you recommended
Just look up GABA on iHerb, they sell it, very cheaply and the Vitamins are made in Australia originally by a chiropractor as he felt most pain, even nerve pain is due to inadequate dietry intake. It was pure genious as proven by my mum. So Look up HiVita and write to them and order several, because at 10ml 3 x daily it goes fairly quickly. Im keeping mum on this for the rest of her life and Im even toying with the idea of going on it myself. Its fairly expensive, but doable if one is in agony. I wish you luck. You are not alone, but there is an end to it, and it just might be with high end nutrition and cut out all sugar. (so hard for me). Wish you better.
I am going through some similar stuff.being passed around from dentists to ear doctors to neurologists.
Finally got a CT scan of my face and it shows some nodules in the right jaw.Nothing in the left.
So ,that is saying that I have TMJ.The ear doctor did something that helped relieve the pain the next day.Sadly I fell on a rock and smashed my nose that day so no idea how long that would last.
ATN is caused by something.
I find that peppermint essential oil on the jaw helps me a lot.I need to use it straight.I recommend using a carrier oil with it,but I need to use it straight.
Good luck trying to sort this stuff out.
And yes,there is usually someone around to chat with.
All the best
Thank you. Tmj is bad. I know before my surgery that caused the ATN he had me on a muscle relaxant that worked great. It was flexeral. I hope your nose feels better
I have had ATN for 3 years, I just turned 27. I believe my nerves were damaged by a nasty wisdom tooth extraction when I was 18 (I’ve had tingling and random numbness on both sides since that) and a deep cavity in a back molar set of my left side, bottom/middle branches face pain in 2014. I’ll never get medical professionals to admit that. I’ve tried almost all the medications. By far Nortryptiline was the best for me. I take 25mg now but I got up to 100mg a day and was pain free, but it made me soo sleepy and groggy I felt I couldn’t live my life even though I was almost pain free (14-16 hours of sleep a night and I would still pass out while driving, it was bad!) So now I am on 25mg of Nortryptiline and 50mg of Lamotrigine. I have a lot of breakthrough pain at these pretty low doses but it was the best combo, and if I go any higher I get nasty side effects, so I deal with “mild” pain (it is only mild compared to my un-medicated ATN) in order to keep up my overall quality of life. It took me 4 months to get a diagnosis, 8 more months and a move across the state to find a good doctor, and 2 1/2 years to get on good medications. I had tons of misdiagnoses, rude and ignorant doctors, and tough life changes along the way. Good luck fighting the fight! If you ever want to talk feel free to message me, or visit my Blog for more details at Maskingthepain.wordpress.com. Again, good luck and welcome, but sorry you had to join us.
Hi Kerry, I’m called Wheels for Legs due to an accident that crushed me from the waist down. It hurt! A lot. I have TN and I know what you are saying is true. I never felt pain like that even from being crushed under a machine. Don’t give up it’s really tough but don’t give up. You have to ride your self of the, “I could just kill myself” words. I felt like that going through the PT after the accident when I was told I would never walk again. It is hard to do but if you leave the thoughts there it trys to become reality. SO don’t think that at all.
I have had Cyber knife, Gamma knife, all the drugs you named and more, and I finally ended up having MVD about a year ago now. And for that whole year I felt no pain just everything on the right side of my face is numb, I lost my hearing on that side, I can not control my face when I eat and my nose runs all the time but I can not feel it so I have to have my wife tell me to wipe my nose(lol) like a little kid. I have had two heart attacks partly due to this stuff, I caught Spinal meningitis in the hosp while I was there. So all in all I have had a few problems. I told you all of this to try to show that you can make it too just don’t give up. You have my love and support and all my prayers.
Kerry,
I have TN in my in my V1(forehead, eye) and ATN in V2 (upper check, nose) since dental work. The only medication that works for that pain is a tegretol and gabapentin combo. Elavil does nothing for me, as do others mentioned. If I didn’t have the tegretol for my tN I honestly don’t know what I would do. But when I get flare up of ATN it feels like my face had been bashed in by a baseball bat and nothing takes away that pain until it subsides after a few days or so average. Now that my state legalized marijuana next time I have bad flare up I may just see if that helps!
I can’t get dental work done or it definitely causes flare up. I no longer get any drilling kind of work done any more because that is just way too much, I just get my teeth extracted if anything is wrong with them. This has been so much easier on my life when I figured this out, I don’t even try to argue with people or dentists who don’t understand why someone in their 30’s/40’s will pull out their teeth instead of filling, because they obviously don’t understand trigeminal neuralgia!
I get migraines in the same side of my face- it’s like a cycle- if I have a migraine it will set off the TN or vice versa. Does this happen to anyone else?
I also have degenerative disks in my lower back and neck giving me anywhere from bad to extremely severe pain daily. I have hydrocodone and methadone to take for that but these don’t do a darn thing for TN or ATN.
I hope you are feeling well today.
Many blessings, Krista
Oh my goodness. You’ve had a lot of pain in your life. That breaks my heart. I’m glad you’ve got relief from your mvd.
You’ve got my love and prayers. Thanks for taking the time to write your story and kind words to me. You have a lot of strength and someone to looked up to
Krista, I responded to the up above person on your reply sorry.
Now for you, you have had it very hard. I get the drilling. You probably can’t use an electric tooth brush. I can’t. Tegretol works and I hope you get to stay on it. It works for me but they are taking me off it due to elevated liver enzymes. Which sucks. I hope you start to feel better
Hi, Thanks for the kind words. Yup pain but don’t let if get you down. And
as fro the problems I’ve had, not to bad I get a pretty chaor (power) to run
around ina nd I get to park by the doors now. Seems kind of nuts, now I got
a power chair to ride inand I could park at the end of the lot I now get to
park by the door, hummmm. Oh well thats life never get what you expectlol .
How are you doing better I hope I heard a saying that I am still trying to
get straight, when the going gets tough, – the tough get going. hummm. Do
you think that it mean that when the going gets tough that the tough run?
Maybe huh. lol Anyway hang tough and we will both find out if we should run.
Bye love to you.
Wheels 4 legs said that.
I empathize with you. We lead frustrating lives. I’m 58 years old and have been dealing with TN and numerous other conditions since I was in a bad MVA in 1989. First, all the antidepressants are fruitless. I’ve been down that path. You don’t have mental issues but rather physical issues and if they are properly addressed the mental strain subsides. If you are a believer in holistic approach, try hypericum perf. It’s great for nerve pain. I’m eligible to be on morphine but refuse. I take Percocet as needed. Imitrex is great for headaches which I also take. I’m happy to mentor any way I can because I feel your pain. It’s a common denominator which is why this site is great! Also, you may want to try the stuff for babies who are teething…anything with the word Caine in it. It numbs everything. Keep me posted. Patricia
