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Thread: ATYPICAL TRIGEMINAL NEURALGIA, please read, I am in agony

  1. #1

    ATYPICAL TRIGEMINAL NEURALGIA, please read, I am in agony

    I am new to this forum and I feel horrified

    six months ago I started to have vertigo, my world was spinning 24/7 I was horrified and went to the doctor, got an MRI which was fine, then went to an ENT and she found the cause (Vestibular neuritis), a virus attacked my inner ear and left me with vertigo..... the vertigo slowly started to go away after six months.

    One of the worst symptoms of the issue I had was anxiety, apparently the vertigo causes the brain to go S.O.S and you experience unimaginable anxiety!!! (It was hell for me, I felt my brain shrinking at times, that is how horrible it is!)

    So after putting it all behind I noticed that I started to feel a sensation on my left cheek, I ignored it at first and then I felt like this tiny stabbing pains on my jaw so I made the mistake of googling it and it says atypical trigeminal neuralgia! (I am HORRIFIED ONCE AGAIN), it's like I went back to square one.

    So I started to google the symptoms of atypical trigeminal neuralgia (it occurs in 1-2 patients out of 100,000 people each year), that is how rare it is!! but my symptoms match to a T

    what scares me its that its progressive and it causes the most excruciating pain known to man, worse that giving birth and its chronic!

    symptoms are:
    -Burning sensation on one side of the face

    -my lip on that side feels electric, like if I rubbed curry powder on it

    -the muscles around my ear are kinda painful if I press on them (which gives me the hope it is just me tensing my jaw)

    - I went out and the wind made it burn around the nose, cheek

    - the lip area where is kinda sensitive feels a bit sensitive to touch

    -right now my cheek started sort of burning again

    -yesterday both sides of my jaw were very tense

    One thing I don't have is the stabbing pain such patients feel, but they told me that you can have such disease without the stabbing pain.

    I must admit my pain more than pain is discomfort in the area and that for a week now I have not stopped thinking about it.

    but why the symptoms are so specific? why? why do they match? I mean I know anxiety can give you palpitations, panic and so on but I haven't felt that... I just feel horrible nervous and obsessed with this.....

    I woke up feeling better and the symptoms came back and then I go panicky again

    is that how anxiety works?

    is it anxiety?

    the illness is rare, but six months ago I caught something (Vestibular neuritis) that is very rare as well, but what are the odds of you catching something rare and six months later getting something just as rare? Can one be SO UNLUCKY?

    As a third person I am sure (you) reading this will look at me from a more rational perspective and will be able to tell me what you feel better.


    I have an appointment with a neurologist tomorrow

    ONE THING: I just had a minor sensation on my cheek bone and last week wednesday morning I read about trigeminal neuralgia and all this burning lip, eye hurting and so on just came out of nowhere!!! I didn't feel this before googling.

    I did feel the cheek sensation before though.

    could tight muscles on the cheek from stress make u feel this?

    thank you so much for any help you can give me!

    (I read yesterday that your teeth might hurt, and NOW TODAY I have some teeth pain around there) AGGGHHH

  2. #2

    Re: ATYPICAL TRIGEMINAL NEURALGIA, please read, I am in agony

    I went through the exact same thing about 2 years ago though mine was triggered by dental work. I kept having the exact symptoms I was googling and it was very real and very intense. I ended up taking Amitriptyline for about a week and that seemed to help.
    To this day I have no idea if the amitriptyline settled things down or if it was even real at all.

    Maybe that's not helpful but hopefully it gives you something. How did the neurologist appointment go?

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