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.
Hi. I was just diagnosed with TN on Tuesday, March 1st, 2011. I have been experiencing this severe pain since July 2010 in which my husband has taken me to the emergency room only to be shot in the butt with demerol and told to have a nice night. I have seen my dentist on numerous occasions complaining of the same pain but he keeps advising me that my teeth are beautiful and there is nothing wrong with my dental. I have been to an ENT in which I have had a MRI done stating that my sinus cavities are beautifully clear. When I experience these bouts of pain, they are excuriating. I have not been to work in a month (thank goodness for short term disability and FMLA) because I have no idea when these attacks will happen ~ usually when I am on the phone, eating, and some days it's difficult to brush my teeth. Finally, my dentist referred me to an oral surgeon, that is who I saw on Tues and I had 2 attacks while he was trying to examine me. He immediately stopped and did this unusual MRI in his office and told me that he was diagnosing me for TN and that he would confer with a neurologist to let him know that he was starting me on Carbamazepine 3x a day for 10 days. I'm suppose to go back on the 15th for a follow up. These pills make me feel really loopy but I have not had an attack since Wednesday morning. Anyhow, the doctor did tell me that I was the youngest person he has diagnosed for TN, I am 39 yrs old however I am 1/2 asian. I spoke to my mom about this disorder and from what my mom's told me, no one has had this sort of experience on her side of the family.
Yeah ~ I sit here and cry during the day while my kids are at school. I am embarassed to go back to work so I was looking into social security disability benefits and seeing if this disorder qualifies. I am afraid to drive because of the loopy feeling so would I qualify for handicap tags? I am not one to take advantage of our government and assistance but I really don't know what to do and who to turn so maybe someone can assist me with some friendly advice, please.
Yeah ~ I sit here and cry during the day while my kids are at school. I am embarassed to go back to work so I was looking into social security disability benefits and seeing if this disorder qualifies. I am afraid to drive because of the loopy feeling so would I qualify for handicap tags? I am not one to take advantage of our government and assistance but I really don't know what to do and who to turn so maybe someone can assist me with some friendly advice, please.
I was dx in Oct of 2009. I live for a little over a year and half being doped up on Tegretol and Bacfloin, Carbamaepine, you name it. I am a success story of MVD surgery. My advise to you is to go and get the surgery done if you are a candidate. Your neurologist will either recommend you to a surgeon that does this kind of surgery. Don't waste another minute being doped up or worrying when the next attack will come. I had my surgery on Dec 2, 2010 and I have been painfree since. I have my life back. I will add you to my prayer list. This diesease is horrible and it wrecks your life. Do some research on the MVD surgery and if you have any questions, let us know. Alot of people have had it done and are sucess stories. We all are here to help and listen to you.
My TN was hereditary on my Mother's side of the family. I lived with TN for almost 3 years before having MVD surgery. My TN progressed to the point where I had to just keep increasing the medication until finally I seen a neurosurgeon , had an MRI and he highly recommended MVD surgery for me. I just wish I had of gone on and had the surgery done years earlier. Because of waiting my trigeminal nerve was very irritated and is taking awhile to heal. I have been told that if Tegretol stops your pain then it is probably TN pain that you have. Most people do adjust to Tegretol and then the side affects do become less noticeable.
There is a very good book called "striking back". It will give you a lot of really good answers and advice. You will be in my prayers.
Linda