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Undiagnosed TN ...Pain returns more intense and lasts longer

Posted , 7 users are following.

Texasbutterfly
Texasbutterfly

I have had this condition for 6 years. The pain feels like electrical shocks in my teeth and jumps to my top gum now. The intense pain will go away for a few months at a time and then return for 2 to 3 months. I have been able to cope without ny drugs or remedies. Now I am a full time caregiver to a father with dementia and I have intense pain since November 1......I feel like I am about to lose my mind! I finally went to a Dr. and she prescribed Gabapentin....has not started working yet? What dosage have others gotten relief from the pain, I might not be taking enough. I am not new to pain but I am new to medicine and looking into support groups. I can use any kind of help.....I so much enjoy reading the comments so I can take something away for my life. I originally had a root canal because it felt like the pain was in my teeth...a dentist finally said it is not your teeth. He and other Dr mentioned TMJ...I have none of the symptoms of TMJ. My current Dr is being very helpful. I just don’t understand why it subsides for a few months and then comes back with such intensity?

0 likes, 6 replies

6 Replies

  • greg66242
    greg66242 Texasbutterfly

    Posted

    Hey Texas,

    TN has a mind of its own. It shocks you when it wants to, and there are many triggers that set it off. I would find a Neurologist who has a vast knowledge in this area, and let the Neurologist set up a MRI, and go from there. In the mean time, I would order the book "Striking Back", to do your own research on this thing called TN.

    Best of wishes,

    Greg

  • Betty58
    Betty58 Texasbutterfly

    Posted

    Hi Texasbutterfly, I have exactly the same symptoms as you with the electric shock like pain in my teeth moving from top to bottom. I had root canal and a filling replaced before the dentist referred me to an orofacial consultant. He gave me oxcarbazepine 150 mg 2 times daily but I had to double the dose as I could still feel the pain. I am now having to reduce the medication and take Lamotrigine as well because my kidneys are affected. I still feel twinges but pain hasn't been for a month. This only started in July whilst flying and came back on 3 other flights. I don't know what the future holds but forums help me to feel supported. When the pain is there I woul take anything and the anxiety of waiting for it to return is terrible. The only trigger I know is flying. Do you know your triggers. I hope you get relief and feel supported from others . Good luck.

    • christy44311
      christy44311 Betty58

      Posted

      Hi, Betty,

      I’m so sorry to hear about your pain. Mine began 18 months ago after a crown was placed on a back molar. My pain is more of a constant ache in my teeth and gums and will move from side to side and top to bottom. Sometimes it will stay in one spot for months at a time. I had many root canals done and went from doctor to doctor trying to find what was wrong. I had an MRI which showed nothing. I take Gabapentin 2100 mg a day and it helps sometimes but I still have pain. My doctor added Cymbalta 60 mg and that has really made a difference. I have been diagnosed with Atypical facial Pain (atypical odontalgia), and the doctors are confident it’s NOT TN but my symptoms vary and sound a lot like yours with the shocks in teeth. Ugh, hAng in there - it took time on the meds to feel any relief. 

    • wannahelp2017
      wannahelp2017 Betty58

      Posted

      Hello  Betty 

      I am also on the Carbamazepine and I hate the way it makes me feel and I also have kidney disease so how are you weening yourself off of it 

  • vicki78970
    vicki78970 Texasbutterfly

    Posted

    I couldn't find any meds that worked. I read in a magazine about turmeric taking away pain. I use Turmeric, El Carnatine & glucosamine. Takes the pain away for 12 hrs during the day. Night time I use them plus put a sensitive tooth paste in the hurting area.  I pray this helps!

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