1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Tegregtol-A Cure For TN?

Posted , 4 users are following.

heather81741
heather81741

Good afternoon, my neurologist has indicated that Tegretol will "cure" TN after a period of time as it "re-sets" the nerve (s).   I would love any and all comments on this drug and your experiences with it.  I was quite sick taking it at first, but have gamely kept with it, with some success.  He would prefer I stick with the drug vs. surgery.

Heather

0 likes, 7 replies

7 Replies

  • fed-up
    fed-up heather81741

    Posted

    i've never heard of the nerve resetting itself because of tegretol!! as usual the drugs will wear off at some point. unfortunately there is no cure for TN.

    i didn't get on with tegretol at first and tried another drug but that wore off and i was on the max dose so i asked to go on tegretol again and had no side effect at all, im on 400mg a day and been on it for about a month, i get breakthough pain but touch wood its ok.

    • heather81741
      heather81741 fed-up

      Posted

      I certainly find it's better to be regular with the Tegregto!   It took while to tolerate it but I'm doing it.   Am still going to persue other avenues though as I just don't see being on meds for the long haul.
  • Karen3366
    Karen3366 heather81741

    Posted

    Hi Heather, I have never heard of TN being cured and have been on Tegretol 200mg now for about 2 years. At first I was completely exhausted taking them (even such a low dosage) but I am now used to them and in fact know they are the best thing to take as if I am late taking one the pain in my face comes back within a few hours. I wish there was a cure but my GP definitely hasn't told me about one.

    Hope you stick with the drug as I definitely would prefer this to surgery. I did however on a visit to a Neurologist have an injection given to me in the side of my scalp which made the pain disappear instantly. I don't know what this injection was but if I could have one every day I would have make the journey to the Hospital every day.

    Karen 

    • heather81741
      heather81741 Karen3366

      Posted

      Hi Karen, and thanks so much for responding!  I think the biggest problem for me is figuring out when to take it.  As well as how long the pill takes in your system for it to be working.  I seem to be not to bad during the day when I'm active but come the night time it's horrid, and I dread going to bed as lying down seems to make it way worse.  I too would prefer not to have surgery but wonder about staying on a drug (s) for such a long time as I'm 52.   From what I understand from this forum, it's preferable to have the drug in your system all the time...but I've also had occasions in the past couple of weeks where I've had to take more than my dose just to function...and then it calms down.

      Thoughts?

      Heather

    • tony91887
      tony91887 heather81741

      Posted

      You should take Tegregtol as prescribed by your Doctor. And do not skip your dosage times. That is a big no no!  It would only make things worse for you. Stick to your Dr. recommendations. Trust me,,, I know!  *Smiles*

      Normally; it is prescribed to be digested every 12 hrs.

  • Starr64
    Starr64 heather81741

    Posted

    I feel for anyone dealing with TN pain and the medication that "helps" it. I had the decompression surgery (I was 44) and was pain free for 6 years. When it returned, it brought a friend, Chronic Paroxysmal Hemicrania (CPH). I was prescribed Indomethacin and Tegretol. I could barely function. Lucky for me I only worked 5 miles from home. There is no way I could have driven any further safely. The problem is once I got there, I was hardly any good. My vision was blurry, my mind was wondering. It was horrible. I finally went back to the Neuro that did my MVD surgery and he did a trigeminal nerve block. I was put to sleep, he went in through my check to the Tri-nerve and put the medication directly into the nerve. It was still very painful for about 2 weeks and then one morning I woke up pain free. The beauty is, if it comes back, I can get it done again. He said it can last any where from 6 mons to 2 years. I hoping for the 2 yr mark. Surgery isn't for everyone because you have to have the right surgeon (mine is Wonderful!) but you might want to try the nerve block. Hope everyone finds some kind of relief.
  • tony91887
    tony91887 heather81741

    Posted

    Hi Heather,

    By no means is Tegretol a cure for TN. If anything.... It is a suppressant of the acute pain symptoms of TN.

    In other words, it helps reduce the activity of the nerve, reducing the constant pain activity cause by it.  But. No…. Unfortunately, it does not cure TN.  I wish it did. “I would be a very happy man.”

    But. No such luck.

    Sorry!

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.