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Hi!I’m new here. I was just diagnosed. I have my first appt at the neurologist tomorrow. My pain is not in my face,it’s in a breach of the Trigeminal nerve that’s in my head and ear. I haven’t found anything about that online. Does anyone here have pain there?Thanks!

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  • Posted

    Yes, I do have.

    It's severe pain in ear and head. To be precise, it's radiating.

    I have case of right TGN but now, it has started in left side too with gradual increase in frequency and intensity of pain.

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  • Posted

    Just if I lay on the affected side at night. Have you found any relief yet? Some people get relief with a heating pad. I get relief from 800 mg of Turmeric. (An all natural spice in a soft gel cap in the pharmacy) Then I take Carbamazapine at night.

    Sugar & foods with acid (tomato;s) are triggers & set it off.

    I pray you get relief soon!

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  • Posted

    I was just diagnosed as well. TN1 treated so far with horizant. It seems to be working for now bc i can think straight now when im having a flare up. But at the same time it still feels like an insane headache in my face. The best thing for me so far is a heating pad or a ridiculously hot wash cloth. I'm sorry I'm not much help but I hope things get better for you soon.

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  • Posted

    Yes! I do! And it's annoying, too! I thought I was the only one! lol. I suggest exercise, like elliptical bike or something similar that is gentle but gets the blood flowing. A lot of people have been surprised to find that getting the blood flowing actually helps not only ease the pain but sometimes the pain totally goes away temporarily! It's awesome! Keep your stress levels down. Practice deep breathing (because when you are in constant pain, you are most likely not breathing deeply enough on a regular basis). Drink plenty of water (stay hydrated). Take vitamin B-12 (most people don't get enough and it's hard to overdose on it). And know that there is support here and elsewhere. Please keep us posted! And I hope you have a neurologist that is experienced in TN! If you find they are not, switch doctors. It makes a huge difference. Good luck!

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