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.

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Cindy2 02/11/2018

Hi Everyone I am almost 50 and a few years ago I came down with TN. Effects my left back tooth and left side of face usally attacking at night mostly feels like an ungodly toothache that stabs. I refuse to take the meds that kill pain until I figure out what the cause is. So I am tracking my symptoms. I have had several dental procedures however I was told it was not from that. I had an MRI with contrast and nothing wrong was found. ? Doctors not really concerned however I am. Any input is appreciated. What an odd and painful thing to have. And where it comes from is a mystery. So now that the MRI shows nothing what is the next step?

mmztcass 02/12/2018

Hi:

Are any vitamins being taken such as of the B12 and the vitamins B complex? Has any B12 test been done to see where the numbers are at?

{{{hugs}}}

ingelo 02/26/2018

My MRI did not show anything and I understand it often does not. However, I did go on medication. I have had this disorder for about 10 years. It goes away with medication but comes back periodically. Right now it's back and I have had to increase the Carbamazepine. I see no point in suffering.

jansha 02/27/2018

Oh I agree. I wish my MRI had been more conclusive. It's very frustrating to be told you have TN but can't do surgery because we can't pinpoint it. So I've been on a combo of Tegretol and Neurontin with good pain control but my memory is shot. Anyone have good results from acupuncture?

pegleg 02/28/2018

I have had this for years am on tegretol and blood thinners ,the cause in my case was the trimeginal nerve being depressed ,and so firing off ,and causing almost unbearable pain,I have had practically all the operations,and crashes due to miss diagnosis on meds ending up in hospital,it's been quiet for a year to date ,and that's the longest without a flair up,am told I am getting to the limit on tegretol so wish me luck,can tell you all about the operations if you need any help.

Ss1981 06/16/2018

I too have tooth pain .I suffer from tn,they started me out on meds because my mri showed nothing but all my symptoms (shocking pain on my left side )pointed to tn.eventually The meds didn’t help anymore so we did mvd Surgery the pain away for about a year ( The surgery was worth it I can actually live and not be crying every day even though I still have pain )but now I’m back on my meds and now it hurts like a a really bad toothache.And periodically minor shocks to that side I can’t talk because my tongue touches that part of the gum and to swallow it hurts is again the touching of the tongue .So I know how you feel aggravated irritated just wanna be done with the whole pain!! so I know how you feel . Are use Orajel to numb the area around the tooth and sometimes even the inside of my cheek it works for me it calms the nerves even if it’s only for a few months minutes I think it’s worth it. Just food for thought hopefully you get some relief. Sorry it was so long

Julius 06/21/2018

Hi everyone, I'm new here my daughter told me to reach out to support groups. My TN started out in 2016. Very strange shocks that are on my left side. I tolerated them for awhile, then was they got worse (quite quickly) I went to the dentist of course, he wanted to start pulling my teeth and do a root canal. I knew better my teeth were fine. I work at a large hospital in Boston and work with great docs so they said see an oral surgeon and she what she says. She was the first to dx me with TN. She said your teeth are fine. I then went to an neurologist and he also diagnosed me and started me on Tegretol 400mg. Had the MRI showed nothing of course. Then about 6 months later there was no pain and I hate being on meds so my doc agreeded we could stop the meds. All of 2017 I was fine, now it's back and its back bad. I am now on 1200mg and my whole life has changed. I am sick every morning from the meds, I can hardly walk a straight line, and I want to do nothing but sleep. The shocks are still breaking through even on this dosage.

I just need to know this will pass with the side effects? Will it? BTW my name is Teresa and I don't mind telling people that. I'm sorry we are all going through this stupid disease.

garydstanton 02/16/2019

Has anyone found any books that feature alternative meds and diets or something besides being on Carbamanzepine forever? I'm only on 200mg/day, but it leaves my body very itchy and my balance a bit off, so I'm no longer able to play sports. I'm a young 69 years old and in great health, otherwise. Any suggestions besides being on this drug forever?

NitzschkeD 06/20/2019

I have just begun having issues from TN in December. Is anyone having issues functioning. I know someone said their memory is shot, I can relate and it’s not benefiting my work.
There are days I just feel like functioning is out of the question. Between the pain, lack of concentration and other effects of, I am guessing the medicine, I am having a really hard, painful, miserable time.
Any suggestions, thoughts, things anyone else has done to help get relief...

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