
Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

deleted_user
I am a single 28 year old woman. I have been diagnosed with TN last year ago and things are not getting any better. I can't function on a normal basis. My parents are supportive but my friends seem skeptical. Like they look at me and I look healthy. But my pain and depression rulls me.It's so hard to explain to someone who controlling and how horrible this pain is. Please I would love to hear some experiences and any advice you may have for me, about what steps you have taken on the path while dealing with TN.
I have no appetite, lose a lot of hair in the shower, no strength, am so emotional, and physically weak. Please write back someone, I am desperate to speak with others who will understand me.
Daphne
I have no appetite, lose a lot of hair in the shower, no strength, am so emotional, and physically weak. Please write back someone, I am desperate to speak with others who will understand me.
Daphne
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maybe you should ask about tegretol it may be the drug for you. good luck
elaine
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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
try to get a second oppinion w/ neuro and see what they think. good luck.
elaine
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.......
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
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