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TN or Sinus issue? Please help!

Posted , 6 users are following.

JHGD1989
JHGD1989

Hi there, 

I hope you don’t mind me posting but I desperately need some clarification. I am so confused. My symptoms started 2 years ago – I am now 27. It started with two weeks of waves of pain in my top left hand teeth. These waves would come every couple of mins and last about a min or two. I visited 3 dentists in this time but they all said there was nothing wrong. My doctor said it was a dental problem so would just keep sending me back to the dentist. In the end my dentist took out my wisdom tooth as a precaution. This didn’t stop the pain (though I had some rest from the pain until the injection wore off). Eventually all the pain went and I began to get things back on track. For the next year I had spells where I would have 2-3 days of pain – I would just lie in my bed and wait for them to go. This year I had another heavy spell of pain. This lasted nearly a month and started in my teeth, working its way up to beneath my eye and towards my temple. This time I had fight and went to my doctors nearly every week wanting them to find out what was going on. I was put on many antibiotics and sent for blood tests and was eventually referred to a neurologist. I saw two doctors during this time, one was 100% convinced it was TN and the other was 100% convinced it was a sinus issue. Towards the end of the month, the lymph nodes on the back of my head swelled up significantly – it was very painful to lie down but this felt like a message from my body to say that this was an infection. I have also developed white lumps on the back of my throat which reappear every couple of weeks (I have them right now). My neurologist thought that it sounded like TN and sent me for an MRI – the MRI came back clear. I am still completely confused about whether I have TN or a sinus issue – I am scared to take the Trileptal every day as I had hallucinations and extreme dizziness when I have tried it previously. And I really don’t want to take the medication whilst there is still confusion as to the diagnosis. 

I feel like my symptoms are not typical of TN but then there doesn’t seem to be an exact list of symptoms. It would be incredibly helpful to me to hear if anyone else has had similar symptoms and what they were diagnosed with.

Once I know what is going on, I hope to help someone else as this has been incredibly stressful – I am not the same person I used to be. I now have panic attacks when I feel the pain coming on. I feel like I can’t go away or change jobs. I am completely isolated. 

Thanks for reading and sorry for the essay! 

Jessica 

0 likes, 9 replies

9 Replies

  • Valkyrie
    Valkyrie JHGD1989

    Posted

    Welcome Jessica,

    Here are a couple of things to think about: 1/When I get infected sinuses, the Tn becomes worse. You can have both conditions at the same time sometimes.

    2/Do your attacks happen in the winter exclusively or in the cold or windy weather.

    3/ There are other drugs besides Trileptal and one of them may help you without making you feel sick. The people on this forum can probably give you the name of the things they take so you can write them down or print them and as your Neurologist about trying one of them. I take a combination of Tegretol and Lyrica. Others take other kinds of medications to control their Tn.

    4/ Dont let your Neurologist just fob you off, ask questions, read up on the internet and grill them until you get answers.

    5/ Have they mentioned that you can have an MRI and it comes back clear but you can still have Tn. Also that there is more than one kind of MRI. There are more in-depth MRI's and MRI's with contrast.

    6/ Consider asking for a referral to a different neurologist. My first one was useless and the second one is not a lot better so I have to suggest things to him rather than the other way around.

    Keep reading up. If it is Tn, you need all the information you can get. The people on this forum have a lot of knowledge which will be useful to you.

    -V

  • akil41128
    akil41128 JHGD1989

    Posted

    Try taking nrirontin instead of trileptal, less side effects

    It sounds to me like u have tn

    If neurontin helps, it is just confirmation that u have tn

  • Tnhurtsme
    Tnhurtsme JHGD1989

    Posted

    I have teeth pain an pain in my temple from an ear infection that has been really painful for over a year mine is constantly hurting im on gabapentin an oxcarbazepine
    • akil41128
      akil41128 Tnhurtsme

      Posted

      Go up on the gabapentin dose, up to 2000 mg daily or even 2800

      If Ned's don't help check with neuro surgeon

    • Tnhurtsme
      Tnhurtsme akil41128

      Posted

      Gabapentin makes my mouth numb if i take too much an i have taken 1800 no difference between that i had to add 50 mg of oxcarbazepine but i dont like it makes my muscles hurt really bad if i take more then 100 mg of this stuff sucks really bad
    • Valkyrie
      Valkyrie Tnhurtsme

      Posted

      Gabapentin (marketted in this country as Neurontin) does not suit everyone of course. Nothing does but  I have never heard that particular side-effect before. It does, however, have as long a list of side-effects as Tegretol and Lyrica.  Have you tried other drugs? Just curious.
  • greg66242
    greg66242 JHGD1989

    Posted

    Hello Jessica,

    If you can get the book called, "Striking Back", it has tons of information on what is going on.In the mean time, keep RESEARCHING on the internet. Places to research would be John Hopkins, Mayo Clinic, Duke University, and many others.

    I hope this helps a little.

    God Bless,

    Greg

  • Valkyrie
    Valkyrie JHGD1989

    Posted

    I too have heard of the book "striking back" that Greg's answer talks about. This book has also been mentioned favourably on another Tn forum that I post on although I have yet to read it myself. Please let us know how things go for you, Jessica.

  • susan33651
    susan33651 JHGD1989

    Posted

    Hi,

    As with Valkyrie I too get worsening TN pain when I get Sinus infections. I can also get Sinus infections without any aggravation to the TN! 

    Persist with your Doc to get a diagnosis and appropriate treatment. Insist on referrals to specialist in ENT AND Neurology.

    Best of luck.

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