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trigeminal neuralgia

Posted , 28 users are following.

Guest
Guest

I have been diagnosed with trigeminal neuralgia, what a painful debilitating condition. However my GP put me on gabapentin and the symptoms are easing now, i hope to be pain free in a few more days.

I couldn't think straight because of the pain but i am now hopefull, i know it isnt a cure but at least the relief is fantastic.

3 likes, 61 replies

61 Replies

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  • Sunnieedwards
    Sunnieedwards

    Posted

    Has any one I here had the gamma radiation knife surgery? I am curious about the experience as I am looking into having it.
  • Sunnieedwards
    Sunnieedwards

    Posted

    Oh my I am having a serious problem. My tri gen seems to be affecting both sides now. And yes this is brand new. I am going to my doctor today. But my meds are not helping at all. I am on 900mg of carbamazipine and 900mg of gabapentin everyday. Oh I hope my doctor can help, I am in so much pain. Didn't know I could handle this much pain.
  • alicot
    alicot

    Posted

    This is horrible! Ask for the surgery so you can end this pain!

  • Sunnieedwards
    Sunnieedwards

    Posted

    I did. I have been on the waiting list for a year.
  • alicot
    alicot

    Posted

    Why so long? Where are you?!

  • Sunnieedwards
    Sunnieedwards

    Posted

    Would like to report that the pain has for the most

    Part, subsided. Small headache left but that is completely manageable compared to what it was. Didn't make it to the doctor however as they were closed when I got of work today. I am still new to all of this and not very good at speaking up at the doctors. But getting much better. This forum has helped so much with all the info and feedback. So thank you to all. Just putting it out in to the universe.

  • sharon33606
    sharon33606

    Posted

    Hi I also had both sides for a while and my neurosurgeon said that was so rare. They put me on lamotrigine and after a while the pain disappeared. 2 weeks ago had the glycerol injection under ga & struggling with aftermath especially my right eye so I am to have another MRI scan. Trust you get an answer & speedy relief. It is definitely a thief of your life.
  • Lesliebeall2
    Lesliebeall2 Guest

    Posted

    Please let me know of any home remedies that ease the pain. I am on neurontin, tegretol, a migraine narcotic medication and amitryptiline and it barely touched the pain I'm feeling. Thank you
  • InvalidFileName
    InvalidFileName Guest

    Posted

    Hello,

      I was diagnosed with trigeminal neuralgia at the age of 22.  I lived with for over 12 years, I was on from 200mg all the way up 1600mg/day.  I went for cyber knife surgery at the Boston medical center.  I was amazed how easy it was.  I was actually pain free and off my meds for about 6 months.  They moved me to 1600/mg of tegretol it seemed my body got use to the dosage.  I saw a fox 5 episode where dr goodman a neurosurgeon from st Luke's helped this lady by performing MVD.  In my case I had no choice I couldn't lick my lips an had to take Percocet to function.  I decided to go under the knife on September 29, 2013.  I am currently pain free and off my Meds, I have a very slight and I mean slight numbness at the top of my lip where my trigger spot was but if I bite my lip I can feel it.  I will takes his over that pain any day.  I wanted to wait for my 5 year mark in order to post on the forum.  I thought it would share my story.. Wish you all the best of luck....

    • Tnhurtsme
      Tnhurtsme InvalidFileName

      Posted

      Did you have TN 1 what was your cause for your pain I've been thinking of cyberknife but I don't think it will last very long I have trigeminal neuropathy from an ear infection just curious

    • InvalidFileName
      InvalidFileName Tnhurtsme

      Posted

      Hello,

        I had a chipped tooth and went to the dentist and he gave me a bridge. Dunno why when he could of just capped it.  After that about 2 months later I started getting shocks in my mouth.  I was diagnosed with atypical trigeminal neuralgia.  Before they gave me tegretol my episodes would last anywhere from 5min to 45 min.  The pain was like I had 2 live wires and I was touching them together.  

    • InvalidFileName
      InvalidFileName Tnhurtsme

      Posted

      I had atypical the episodes at first would last from 15-30min.  Then lessened once on tegretol.
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