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TN2 trigeminal neuralgia 2

Posted , 3 users are following.

valerie17599
valerie17599

As i have learned there are 2 types, i have TN2, constant nagging pain, i have pain on the left side of nose and inside nostril and jaw, cheek and gums where they took my molar out and then did a bone graft. Very depressed. I am taking gabbapentin, and tramadol.

1 like, 9 replies

9 Replies

  • marlene36342
    marlene36342 valerie17599

    Posted

    Hi Valerie - I too suffer greatly with TN.  I was diagnosed back in 2006 and had MVD surgery in 2009.  Unfortunately, the brain surgery was unsuccessful.  I am not familiar with TN2.  Actually heard of this TN2 since I joined this wonderful group.  I also have constant pain that never goes away.  My pain level, based on a 1 to 10 level, can increase or decrease at any time.  When I do have severe pain, I must remain in bed for 3 - 4 days.  I am familiar with gabapentin but not tramadol.  There is another pain med that I do take on a daily basis.  Without this med, I would have no quality of life.  My pain is all on the right side - jaw, face and mouth with bouts of swelling at times.  When my pain level reaches an intolerable level, my anxiety goes through the roof.  I do take an anti-anxiety med which certainly helps me calm down.  If you wish to communicate further, it would be my pleasure.  So sorry for what you are going through.
    • valerie17599
      valerie17599 marlene36342

      Posted

      Hi Marlene, tramadol i think is a synthetic opiate and helps me when the pain is severe, like you if ididnt have this med i would have no quality of life. I have read that the type 1 usually doesnt repsond to opiates, so i am thankful for this med although i never thought i would use this type of medicine, but quickly changed my mind when the pain first hit just one yr ago. I get swelling on the left sde of my nose, and my jaw and face at times. I have to take ativan to cope with my anxiety that comes with the pain. I hate being dependant on any kind of drug but have no choice. I am just so sorry for you too having to go through this horrible pain. Its nice to have someone to talk to about it that understands. I have kind of isolated since coming down with this partly becausei kept waiting for it to go away, but now see it is not, and nobody understands it when i try and explain it to them, my brother thinks i brush my teeth to much and thats what is causing my pain in my mouth, he just doesnt get it. The pain all started after having a molar taken out a nd a bone graft. Talk to you soon Marlene, my heart goes out to you as i know how bad the pain is, it takes my breath away the pain.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie - I have been away for a couple of weeks and have just now read your post.  I also have to take an anti-anxiety med because when the facial pain gets so painful, I need something to help settle me down.  I am amazed that this is of some help to me.  I too live a life of great isolation.  When i have good days, I always try to make plans to do fun things, go out, and have a bit of a social life.  I just can't do that anymore.  Even though I feel good one day, this is certainly not an indication of what my night and next day will be.  I don't feel like i am the same person I was before TN.  Trying to explain TN to others is very difficult.  I have family members that just do not understand and cannot figure out why i have to take 8 pain pills per day just to get through the day.  When the pain does hit hard, I can be in bed from 3 - 5 days.  As you already know, to look at me I look fine but no one knows the pain that can't be seen.  My pain just started one day at work.  Just out of no where!  I am 61 years old and TN started in 2006 - it's been a long time.  I too feel so much empathy for you.  I do hope that you do have some good days.  Please keep in contact as I would love to know how you are doing.  Wishing you the very best.

       

    • valerie17599
      valerie17599 marlene36342

      Posted

      I most certainly will keep in contact, it helps to be able to talk to someone who knows. I tale lorazapam or ativan  same thing to calm me down from the pain. Like you i never know from one day to the next. Thank you for writing to me it makes me feel better your out there.
    • marlene36342
      marlene36342 valerie17599

      Posted

      Hi Valerie - thank you so much for your lovely reply.  I too feel that it is so important to be able to share with each other this horrible disease.  I look forward to hearing from you again.  You can share anything with me and I feel the same with you.  Wishing you many good days.  Until later...
    • valerie17599
      valerie17599 marlene36342

      Posted

      Yes , i am glad you feel you can share with me too. Its really been a blessing to get to talk to someone who can relate. I thank you for that.
  • holly35803
    holly35803 valerie17599

    Posted

    Hello Valerie,

    My situation is very similar to yours. I also developed TN type 2 about 3 months after having a molar extracted. The pain started in the dental area, but then it "traveled" to inside the nostril and nasal cavity to behind the eye (all on the Left side). The pain would land for 10-15 minutes in would place then move again while the whole time I had constant pain behind my left ear. 

    I have been on Tegretol since I was diagnosed 1.5 years ago, and so far so good. I DID have trouble getting a diagnosis, however, because the symptoms for TN Type 2 are so different. I had to see more than one Neurologist to confirm the diagnosis. 

    I am very glad that my neds work for now, and I hope you will eventually find the right Rx or combination of Rx to help you out. I sometimes feel like treating TN2 is a crap shoot. Good luck!

    • valerie17599
      valerie17599 holly35803

      Posted

      Hi Holly, yes it does sound very much  the same. I do take gabbpentin but doesnt take all the pain away, so i take tramadol. When i took carbazapine it caused teribble thoughts i dont even want to say what they were, oxcarbazapine caused the pain to be more intense. I am glad your med is working for you. Your the first person ive read and talked to that has pain up the nostril as well.
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