1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Newly diagnosed with Trigeminal Neuralgia

Posted , 4 users are following.

wianette_67373
wianette_67373

Hi

I have just been diagnosed with TN after thinking I was having sinus problems or ear issues. Started of I was getting flares of pain in my lower jaw and ear (right side) it would could and go. I was getting this pretty much for the last 7 months. It was painful but I was able to push through it. Three weeks ago I got hit with horrific pain in my jaw and ear. Bad enough to force me to the ER where I was told it was most likely an ear problem yet again. Two weeks later I got hit with the worst pain in my life. It was crippling. The ER doctor after looking at the ear and sinuses told me he was sure it was TN and prescribed me with Carbamazepine which has started working almost immediately. I get tired. Have dull headaches and even a bit of a cough that at times can cause me to throw up. Is that normal? And should I still ask to see a neurologist? Also I'm 32 so I know it's rare to get it at my age! Any advice would be greatly appreciated

1 like, 34 replies

34 Replies

Prev
  • dawn66194
    dawn66194 wianette_67373

    Posted

    Hi.  Mine started In January of this year. Like many people I first thought it was dental pain.  I had 3 root canal procedures on a completely healthy tooth which was eventually removed.  Great I thought there cannot be anymore pain as tooth has gone.  How wrong was I it got worse.  The dentist gave up on me and referred me to the hospital.  It was me that googled my symptoms and found TN.  I saw my doctor the next day and was started on carbmazepine.  I was on it for a month or so, slowly came of it and amazingly no more pain.  Felt confident enough to go back to dentist to get a tooth added to my plate, two days after dental work pain started 

    again!  Back on carbmazepine and referred to hospital again.  I didn't go to hospital the 1st time as pain went away, but what ever happens this time I am going to hospital.  Very confused as my doctor firmly believes that TN is NOT brought on by dental work!!  I am so confused.  Has anyone else had a similar experience?

    • wianette_67373
      wianette_67373 dawn66194

      Posted

      I've read that any kind of dental surgery can cause TN. My doctor believes that mine was caused by an ear infection at some point. Although I already have a hole in my optical nerve that may have also had some impact. I actually have a tooth that needs to be pulled and I thought maybe it was the reason I was getting pain in the first place. But the doctor in ER had a really good look at it and was able to touch it and even tap on it and found no signs of infection or abscess so he basically told me to worry about getting a handle on my facial pain and then worry about anything else. He said focus on one thing at a time which has helped me feel less crazy and more like I have some control over the situation. Does your doctor have a lot of knowledge of TN? Has he ever treated anyone with TN?
  • dawn66194
    dawn66194 wianette_67373

    Posted

    Hi

    he has some knowledge although he did give me a fact sheet printed of the Internet,  he doesn't see much people with it no.

    • wianette_67373
      wianette_67373 dawn66194

      Posted

      A lot of doctors have never dealt with TN which can make it frustrating because you can't get the answers you are looking for sometimes. I've been looking online for specialists and even thinking about emailing them to ask questions and advice!
    • dawn66194
      dawn66194 wianette_67373

      Posted

      Hi.  I have definitely got most actually all my information on-line.  If there is a specialist to e-mail I would go for it, the more information or advice the better. 
    • wianette_67373
      wianette_67373 dawn66194

      Posted

      Yeah I just emailed a guy I heard of in the US. Apparently he is one of the best neurologists when it comes to TN so hopefully he will have some more info.
    • louisa55738
      louisa55738 wianette_67373

      Posted

      Would you mind sharing on this forum If you hear anything that might be I use to us? I agree this forum is one of the best thingsive discovered since looking online! Louisa x
    • wianette_67373
      wianette_67373 louisa55738

      Posted

      Absolutely I will share anything I find out or come across! Hopefully by sharing everything we learn it will make it easier to know what to ask our doctors
    • louisa55738
      louisa55738 wianette_67373

      Posted

      That is a good plan, as you cannot rely on the Dr's for information! At least if we have knowledge it gives us power to make informed decisions and ask the Dr's for what we want. Hey, power to the people!

      Louisa x

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.