Has anyone with tn have full force pain mainly from behind ear?

Posted , 4 users are following.

Has been 5 months. Non-stop aching and burning,shooting sharp pains behind ear, inside ear os numb, starting to lose hearing, balance is off, constantly biting my lower lip when eating or talking!! Haven't had full force pain as frequently in last month!! Nothing even starts yo ease pain!!! Teeth, gums, jawbone pain! Crying, wind in car window, stress are still triggers, but biting isn't as off now!! Lose nights of sleep ,have missed work!! Laying on that side ( it's my right) cheek contact was a trigger! Harder time opening mouth when wake up!! Tmj has been ruled out, had mri no sign of tumor but scaroses never mentioned!!! Any info from anyone will be dearly and greatly appreciated!!!!

Thanks

1 like, 6 replies

6 Replies

  • Posted

    Sorry I am having trouble sending a message to you. I wrote you quiet a detailed message but it would not open the page to send it. I will try with this. Contact our Neurologyst through his nurse or secretary. Go to your GP s well.   Join TN  UK.    Join OUCH.        Keep strong. I've had TN for 12 years and now have SUNA.       Concentrate on your breathing.

  • Posted

    hi Amywv37, unfortunately, the pain that you have and all the symptoms show that you have Trigeminal Neuralgia ( TN). AND I do not know that you ever have any consultation with your Doctor, I mean your Neurologist. you should have to see the Neurologist as soon as possible and also ENT specialist to discuss all your Symptoms because the other concern is might be something about your Ear, mostly in Mid Ear. you know at least, at the first place, NEUROLOGIST gives you something that you feel Better.

    I have TN for about 21 years, and I am sometimes really felt miserable because the pain from TN is worst and horrible pain in the world. is constant, shooting pain inside cheek,  lip one side, I mean the pain, is burning pain, you can not touch your face, goes inside your ear, exactly the same as your pain, this pain made me like disable person, even though I am on medication. 

    At first, they put you on Tegretol (Carbamazepine 200 mg) and Ultram 50 mg. those make you sleepy but the best MEDICATIONS are the medication that I am on it,  Lyrica and Baclofen. but you should and have to discuss with your Dr. I hope you feel better and see your Doctor as soon as possible.

    but some things that you can do before you see your Doctor, hot shower not heating pad or ice pad just showering and exercise when increased blood flow make you feel better.  I hope you feel better. 

     

    • Posted

      Thanks

      I'm waiting for the phone call telling me when to go see a neurologist,!! This middle ear thing you and one other mentioned....what could it be.... middle ear infection?? Or...

  • Posted

    Hello There,

    I've also had long term Trigeminal Neuralgia, over 20 years , and agree with all that all the symptoms you dispay are very typical of this condition. I have every sumptom you describe but my pain is in the two upper branches of the nerve . You should have some periods of remission and these could last for quite a while, but I agree wholehearedly with maryamm20950 you need to see a neurologist ASAP and should get some pain relief and/or surgery. It need not be as scary as it first sounds as there are several alternatives. The very beast of luck to you. Stay on the site and you should have some good advice but dnn't be put off by some of our stories. We can all get desponant at times but the condition is not terminal and help can be found. See a good neurologist!

     Gill

  • Posted

    Hi,

    I am a Registered Nurse with 30 plus years experience, a great deal of which is ENT based. One of the things that may be causing your problem is mastoiditis. Do you have any swelling on the bone or area behind the ear? The balance issues and hearing loss are likely to be related to such a problem. The MRI, though, would (or, rather, should) pick up mastoiditis. Ask your GP to refer you to ENT and a Neurologist.

    Good luck.

    • Posted

      Thanks

      No I haven't noticed any swelling, but I'm gonna pay attention now,!!

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