Think I have TN2

Posted , 7 users are following.

I've been having what I thought were dental problems throughout the year, going to the dentist constantly complaining of odd pains in certain teeth along with aches and pains in my jaw?

I was told I had a cracked tooth and so a root canal was performed. I was pain free for about ten days and then the pain came back with a vengeance.

This time I'm getting pain from my right temple down to my cheek which feels hot, my upper and lower jaw aches badly and it still feels like my teeth and gums are hurting, ear ache and sleeplessness complete my symptoms and I'm pretty fed up I can tell you.

After another visit to the dentist on Monday to be told yet again that she can't see anything, I've been referred to the hospital but the pain has been so severe I had to go to the Doctors this morning.

He told me he thinks it sounds like Trigeminal Neuralgia and has given me some Tegretol tablets to take along with strong pain killers.

My pain isn't shooting like other comments I have read, it is a constant throb of debilitating pain. I just want it to stop.

I am sick of the dentist looking at me like I am making it up too. Fed up, and don't know whats happening?

Is this curable? What caused it? so many questions and no one to answer them? I'm taking 2 x Co Codamol 30s every 4 hours, 1 x Ibuprofen in between and I took my first Tegretol today

thank you for reading,


2 likes, 10 replies

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10 Replies

  • Posted

    Hi Mj, I was replying to you when my message just disappeared! Can't seem to find it so I will try again.

    Sounds like TN. It is the most awful condition I have had it for 5/6 years, this year has been the worst but I have found out a lot about it which has given me some control.

    1. Google Trigeminal Neuralgia Association UK and join it. They will send you excellent information.

    2. Look-up online Prof. Joanna Zakrewska she is at the pain clinic at The Eastman Dental Hospital, London.

    She is a doctor and a dentist and the world expert on TN, about 800 people a year are refered to her. I found out about her and my doctor refered me, she is worth the wait. If you look online for "Inside "Health" a radio 4 programme by doctor Mark Porter. He did a programme about TN about 4 weeks ago and Prof. Zac spoke on it. It is online.

    3. I have not found any complete cure. My TN is caused by MS, but only 2% of people with MS have TN but there are several different reasons for having TN. Normal pain killers do nothing including morphine, you need epileptic drugs like tegretol that work on nerves. Finding out as much as possible does help and makes it less frightening. Please post again I will look forward to hearing how you get on and Good Luck. I will be thinking of you. Sally

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  • Posted

    Hi Sally,

    thank you for replying to my post.

    I'm on day 2 of taking Tegretol now, just one a day for the first three days as you probably know. I've been taking strong painkillers too so I'm comfortable but certain teeth are still feeling odd? Sensitive to bite together, a kind of painful irritation and they feel full as if they have been overstuffed? Does that make any sense?

    I'm feeling positive that Tegretol is going to help me, I guess the aim is to come off painkillers completely? I'm just grateful right now that I have some relief from the worst of the pain.

    How did I get this disease? Was it caused by dental work? It's early days for me Sally, I've been referred for an MRI which will give me a proper diagnosis?

    I just hope they get it under control quickly as I also care for my husband who has COPD and arthritis.

    I don't know much about MS but I imagine TN symptoms on top of your MS is just awful to live with.

    Thank you for the links, I shall check those out later and I shall endeavor to learn as much as I can.

    Thank you again,


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  • Posted

    I hope you have received better diagnosis by now. It does sounds like you have Type 2 TN although the pain during your sleep stumps me a bit and generally opiate pain relievers don't help much. What is generally suggested in combination with Carbamazepin (Tegretol) is a tricyclic antidepressant. And yes, it is not used for depression but the properites have proven to reduce pain. The most common is Amitryptline.

    I have TN2 myself and I know your pain. I hope you at least you get periods of relief. Hang in there, We are going to get better for sure!!!! If I can help any further, please let me know.


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  • Posted

    Hi mj,did you ever find a cure?.reason I ask is i have had the same problem for 3 years(every single day of them 3 years aswell).i don't know what pain free is any more.iv had the mri scan,multiple dentist appointments and doctors appointments,and always the same answer"can't see anything wrong".iv been on citrolpram 20mg for 8 weeks now and there useless. please let me know as it seems we're in the same position.


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  • Posted


    Any good news on how your dealing with the pain

    Im having a terrible time with this pain

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    • Posted


      My TN has been really bad over Christmas and New Year I have been taking oxcarbazepine.  It dulls the pain but leaves me feeling like a zombie, having difficulty swallowing, pain is bad.

      Have you had an MRI yet?

      Really sorry you are so bad, I think the change of weather does not help, thinking of you and wishing you good luck.



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    • Posted

      Yes I had MRI about three years ago

      I am seeing my gp to talk about this. because at the moment I feel like killing myself it's that painful

      End of this month I'm going to the hospital for some Botox in my jaw muscles. not sure it will help

      But you are right since the cold weather has come the pain has got so much worse

      Thank you

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  • Posted

    Hi Sally really disappointed tried to look for the radio 4 programme you mentioned about TN. Only certain episodes of inside healthough came up?
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    • Posted

      Hi, I'm sorry the programme did not come up.  Hope you are feeling a bit better.  I found TN was bad over Christmas and New year, might have been due to the amount of family here!  I thought having had Gamma Knife done last year with positive results I was free from bad pain but it has returned and I am back on drugs.  Feeling like a zombie.

      I wish you all the best and good luck.


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  • Posted

    Hi mj

    Plz i need your help iam going throw exactly what ur hoing throw hope you have got beter 😊

    I need advice for this crazy pain its constant doesnt stop drivein me mental

    Any relife from surgery or meds

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