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  3. Trigeminal Neuralgia

I had it 3 or 4 years

Posted , 3 users are following.

kathy75678
kathy75678

The pain started like a toothache pain where the nerve is exposed. I went 3 times to the dentist and insisted they pull a tooth. A good dentist would not do this. The pain got much worse after he pulled the tooth. The pain would go away and I would think it went away. The last 6 months before surgery, I did not leave the house. That was a waste of time. It is a very tuff surgery. Read all about it. It does not help everyone. Some people it gets worse. It helped me but I have issues that they never told me about. I have to take the medicine still and I thought that I would be done with that.

1 like, 6 replies

6 Replies

  • wannahelp2017
    wannahelp2017 kathy75678

    Posted

    So are you still taking the same meds for the TN or meds for something new now? My kids were just asking about other avenues beyond brain surgery I told them about the one that is supposed to kill the nerve over about a month but he thinks it may give me cancer. I just either want a dose that I can stay with for years or surgery that will give the same years with no pain 
  • wayne6734
    wayne6734 kathy75678

    Posted

    thanks Kathy

    Just out of curiosity, what surgery was it? ( I went to the dentist too, then he sent me to a root canal specialist, who sent me to Sunybrook Hospital to a dental specialist who diagnosed it immediately and sent me to the neurologist I am now seeing) 

    Wayne

     

    • wannahelp2017
      wannahelp2017 wayne6734

      Posted

      That's what I'm curious about also Wayne because my dentist would not do anything to my teeth he said that I had no cavities and immediately did a referral to a neurologist but I'm still waiting for the appointment 

    • kathy75678
      kathy75678 wayne6734

      Posted

      Hi, Wayne, I had MVD( multi vacascular decmpression surgery. Your dr will want you to take medicine to co trol it for a long time. Surgery is a last resort. I took carbamazine 3 times a day and gabapintine 3 times a day that is the maximum you can take ( 300 mg.) It is hard to function normally) I wanted to get off the medicine. I am back on it anyway but the pain is gone.
  • wannahelp2017
    wannahelp2017 kathy75678

    Posted

    Hey Kathy

    I'm sorry to hear that you sound like it's miserable but isn't the pain gone which was the whole point? Y are u still taking the Carbamazepine now that you've had the surgery and it was a success. I would be confused because the Carbamazepine is what stops the pain in the first place so how do you know that the pain is gone if you are still taking the meds to stop the pain (hope that makes sense) 

    • kathy75678
      kathy75678 wannahelp2017

      Posted

      I was surprised to be taking the medicine also. The paralysis on my left side was not expected. My mouth is so dry that I can hardly talk. My lips, my nose, everything on the left side of my face feel paralyzed. I go to a eye specialist also. My eyes are bad now. I had double vision for 4 months. My neurologist said it would help. I quit taking it for a month and it got worse. I keep telling myself that the awfull pain is gone and the rest will get better. I would suggest you go to" after MVD surgery" they have a forum and it is very interesting and scary.Good luck to you.

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