Triennial Neuralgia 😪

Posted , 3 users are following.

Diagnosed 8 months ago on carbamazepine and amitripteline and they are becoming less effective this is ruling my life I wake up and go to bed thinking about it so scared of the pain its unmanageable when it happens I have never felt anything like it I am waiting to see specialist but I'm constantly living on edge every time I get a small twinge in my face I have a feeling of dread I'm scared to eat drink brush my teeth etc incase it happens, how has this happened, where and why now? It is without a doubt the worst pain ever and I'm worried from googling (worst thing to do) the possible cause for this and if I get pain in the night it's that bad I go to A+E

0 likes, 5 replies

Report / Delete

5 Replies

  • Posted

    I have been where you are. ..several years ago. I finally gave up on taking drugs because I felt aweful on them AND they didn't last anyway.

    So I actively searched for a surgeon who could do one of the TN surgeries.  I was thinking of MVD but found out I couldn't have it because I had MS and it may have caused it.  So I fet radiofrequency surgery where they stick a needle into your cheek and burn the nerve into oblivion.  Very low pain and easy to for ME to do.  Am up and at em right afterwards tho I take a few days or a week to recoup.

    In your case I highly suffest looking into a TN surgeon.  The neruologists have been told to put and keep us on drugs (my hunch the drug companies are behind it) so I had to go outside of the neruologist to find the neurosurgeon.  Once found I got right in.  The neutologist even argued with me and wouldn't give me the name of the surgeon, if you can believe that.  So I just took care of it myself and have not regretted it at all.  Getting off the drugs was paramount to me and so I did what I had to do to find a better solution.

    The good news is that after the surgery I got off all drugs and have been most happy even tho it is hard to eat properly.  I figure it is a tradeoff.  And am OK with it. (Well, not really OK with it BUT no TN pain! )  No doubt about it, it is an incideous problem.

    I say, find a way to get a surgery and get off those aweful drugs!  

    Report / Delete Reply
    • Posted

      Hi I also have MS and TN.  I have had Gamma Knife it takes a little while to work and leaves some pain but it is bearable.  I found the drugs impossible, they made the MS worse (I have progressive and am in a wheelchair) and made me feel so ill.  I have given up counting how many different ones I have tried.  The TN is definately better but not completly gone since the Gamma Knife but I am not taking any drugs -the difference is amazing.

      Sally

      Report / Delete Reply
  • Posted

    Just worried about surgery being an option as it sounds very invasive, I've taken all meds today but I'm getting the ache which means soon I'll probably get the electric unbearable pains. I've been waiting for a referral I can't live with this pain if I get it again tonight I'm going to hospital and I won't be leaving until I have an appointment at least

    Report / Delete Reply
  • Posted

    Also can someone tell me when I have this unbearable pain is there anything pain relief that would work I'm already taking regular meds but if I still get pain now and again why can I take as a quick fix

    Report / Delete Reply
    • Posted

      Gamma knife surgery does not use surgery, it damages the nerve by a dose of radiation, look it up online there is no actual surgery and no pain.  It can take a few months to work.  Because of the MS it will not work for ever but should be more managable.  Mine was constant for almost a year before I had it done and I ended up in hospital with dehydration because I could not drink.  

      Take care and good luck

      Sally

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up