hi....i fell the same way about life passing me by. i have TN for a few yrs now. tegretol worked for me but a week after taking it i had an allergic reaction. they put me on dilantin. it worked for a little while then the pain started again.today i am going to a neuro surgeon to see if he will do the microvascular decompression surgery. he was going to do it a yr ago but i went into remission.so we will see. i need relief and i need it fast! i cant take it anymore. i have a 4 yr old who is always asking "whats wrong mommy" i just tell him i am in pain. i just want my old self back.
maybe you should ask about tegretol it may be the drug for you. good luck
elaine

Tegetol made me woozy - in retrospedct probably shouldn't have been driving... Neurontin was as effective w/o the side effects for me...but everyone's different. Have you had an MRI to find the cause?

Diane

Neurontin has worked for me also, but I take a very high dose. I still have the pain but it is easier to deal with. If you have no help, it is easy to slip into depression. Please get help soon so you can live your life as you once did.
Becky

i have seen several doctors. it seems none of them want to give me a diagnosis. i get bounced from dr to dr. i swear they are doing it to make money. LOL. i see my primary dr soon. in order to get an appt with her and not one of her associates you have to wait a month. i will prob have my mom or sis go with me bc they help me rememberring and they ask questions. i am going to tell her that they need to find an answer to my pain or i will lose it. well enough venting.lol
elaine

daphne,
I was diagnosed six months ago with ATN. I am 30 and have a wonderful husband and two kids. My whole life has flipped up side down. We are the same person and i understand everything you are feeling. I have seen 8 diffrent doctors and currently have five working on my case to try to relieve my pain. I have a pain manegment doc for meds. i am taking lyrcia, avinza, cymbalta, ambian to sleep and ativain for anxiety. It took 2 months just to function with all of the meds. I am seeing an oral-surgen who gives me nerve blocks in my face. I am seeing a dentist who is making me a splint which he thinks will help relax my face. i have a neuro-surg. who is just telling all my other doctors whats wrong with me and that i am not a canidate for surgery. I am seeing a therpist because, like you, i am having a very hard time just dealing with life!!! she is doing hypno-therepy which is very nice!!! I started a yoga & meditation class that i do twice a night. I am also looking into acupunture. I have found that if i stay active in fighting this monster that i have more faith that i will not have to live with this forever. You need a therpist to talk to, find someone who understands chronic pain problems. You need someone other than a family member or friend to talk to. i know what it is like to be beautiful on the outside, where no one can see the pain. it is like if you had a huge, puss filled sore on your face then everyone in the world could see what you feel. It is a monster with a mind of its own!!! Get active and fight it! You can also look up the medication that i am on and see if any may be right for you. I will think about and pray for you. Take care...Andrea

andrea have you gone to more than one neuro surgeon???? i am a candidate for surgery and it will be done on nov 6th. i was a candidate last yr and kinda blew it off. this time around it has been alot worse. i took tegretol about a yr ago and i had an allergic reaction. they then put me on dilantin. this time around the dilantin only worked a couple of weeks. i am very anxious.
try to get a second oppinion w/ neuro and see what they think. good luck.
elaine

"I have no appetite, lose a lot of hair in the shower, no strength, am so emotional, and physically weak."
Daphne, this part right here sounds like a low thyroid. Ask you regular doctor to do a simple blood test for this. If that is what's causing this, it can be controlled by taking one tiny tablet a day.
Love and Peace.......

Hi DNGuyer,

I understand you.

I was diagnosed with TN during my second year in college but i did't really know what it was for about two years. My dentist thought I had dental problems - TMJ and such. I rotated to different specialists and none knew what it was. I almost had root canel and braces - i even asked my dentists to pull out my teeth. luckily he refused. my life too turned upside down. the rest of the story is similar to yours.

two years later, i took a vacation to thailand and had the most intense episodes of pain. i broke down and was admitted to a hospital. that was where the pain was correctly diagnosed. isn't it sad that we live in a country that spend the most on healthcare and it took a third world country doctor to correct assess my disorder? anyway, i was prescribed Neurontin - it worked like magic for a year. perhaps you should ask your doctor about it.

then a year later, i began to have pain again. my doctor recommended invasive microvasscular decompression surgery. and I did it. but before I go on I can tell you a little bit about different types on surgery that could be done (based solely on my perception-you should do more research). 1- gamma knife - this is the least invasive but also least chance of success (about 60%). basically this is shooting laser beam to sort of numb your nerve. 2- balloon surgery - i don't understand much about this surgery. seems to be the hottest thing in the 90s but no longer. doctors recommend this procedures to older patients because it is less invasive than micro but also has less permanent. many patents experience the pain back after ten years. 3- microvasscular decompression - most invasive of the three. the surgeon cuts about 6 inches behind your ears (on your hair line and you can't even see a scar after a while) and go your nerve to separate your blood vessels of the nerve. This one is recommended for young and healthy people like us.

So I did #3. it was like I was given a new life. the pain magically disappeared and I was out of the hospital in 3 days. I had to rest at home for a few weeks but i was feeling fine.

it has been three years now since the surgery. but the pain just started to come back. now I'm freaking out. I was prescribed tegretol and neurontin. the medication seems to control the pain just fine right now. But I am again will undergo the surgery. I dont' want to live in pain again. no way.

hope this helps.....feel free to contact me if you have any questions

good luck....

-Pon

Actually, Gamma-Knife procedure is the least invasive. It's done with radiation directed at a target on your Trigeminal Nerve. I had to have an MRI to make sure I didn't have a tumor, lesion or anything else that would cause the pain of ATN. I didn't so at that time they put me on Lyrica, it stopped the pain. I got myself set up to get a Gamma-Knife procedure after about 3 months of ATN, in Jan. 2010. Neurosurgeon gave me about an 85% chance of the procedure working. Usually from 1 month to years. But, when I told him my inner ear was painful, too, that's when he said I had ATN. My chances were reduced to 50%. Well, I had it done the following day. I had been on Lyrica 100mgx3/day for months. They keep you on your meds for a whole month following the procedure. Then the doc calls you and if you are painfre he slowly reduces your meds. It will take me a good month to be off completly. At the present I am taking 1 pill at bedtime. Never know when the pain will be back, so am living each day to the fullest.
Everyone is different. Every procedure and med works different on each of us. You got to look into everything and decide with your Neurologist whats best for you at this time.
snowbird314

Has anyone had cyberknife for ATN or TN, on another site I have heard they are giving this treatment now for Trigeminal neuralgia