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Newly diagnosed, my symptoms don't seem typical

Posted , 5 users are following.

Wolfewoman
Wolfewoman

I had my first major attack with terrible facial and head pain on the right side of my head back in October of last year. I went to my doctor who first gave me migraine medicine and pain killers. The migraine medicine did nothing, neither did ibuprofin or naproxin. The hydrocodone would help keep the pain down but only for about 3-4 hours. My doctor sent me for a CT scan and then an MRI of the brain to rule brain tumors or problems out. Then she sent me to an ENT who found I had sinus disease and a severe deviated septum so I had sinus surgery. As soon as the surgery was over the pain in my cheek and eye returned. Ruled opthamologist for eyes and dentist for teeth out. Then my doctor recommended gabapentin. She said it may be Trigeminal Neuralgia. The gabapentin IMMEDIATELY helped and after three days with 300 mg. three times a day I am almost pain free. As it comes time to have another does I feel the pain trying to return. What I don't understand but am NOT complaining is that the gabapentin is helping all over my body, not just my face and head. Does that mean I had nerve problems all over? It's weird. I sat and cried because I was so happy last night with no pain. I couldn't believe it. Another odd part is that my symptons seem a little different from those here with TN. Mine is aggravated by cool air and bright light. Cold air is VERY painful but doesn't go over to my ear or down to my jaw area. The pain goes up into my head. It's all on the right side though. Just wondered if anyone had any comments. Thanks!

4 likes, 3 replies

3 Replies

  • eddie13
    eddie13 Wolfewoman

    Posted

    Hi wolfewoman,

    Good name. Sounds like you are in early TN. I was in 2007. Comes and goes is normal. I recommend go to a neurologist. In my case Tegretol manages the TN extremely well.

    eddie13

  • Glor888
    Glor888 Wolfewoman

    Posted

    Hi Wolfewoman

    i agree with Eddie, Tegretol is the best. My TN started over 20yrs ago and my pattern was 9 months on and 9 months remission. But for me it was the right side of my lower jaw and often shooting pains in my right ear. I would invariably get a pain all over my cheek, but not always.

    When 1 retired my TN disappeared for 6yrs then it came back with a vengeance. Unfortunately this time around everything was different. Because of my age my Neurologist said that when you get older some medication doesn't work in the bloodstream very well. I was put on Amitriptyline, Gabapentine, Tegretol didn't work, and now Pregabalin.

    Its not unusual for you to have a different pattern, everyone on here has a different patterns and symptoms. If you're ok with Gabapentine then that's fine it doesn't mean because it's made you feel pain free all over that you necessarily had TN all over.

    I'm not sure how far the TN nerve spreads from the brain so I wouldn't worry about that part. It's always trial and error though, as long as your tablets relieve your pain that's good. But if after a couple of weeks you find the Gabapentine doesn't work anymore then it's up to you to either let your Dr give you an increase in dosage or go onto something else like Tegretol.

    Good luck and let us know how you get on.

    Regards

    Gloriana

  • maggie80535
    maggie80535 Wolfewoman

    Posted

    Hi Wolfewoman have a look at Health Information on this our favourite website? Lots of info on TN.I got so excited by finding kindred souls here and discussing I actually didn't know about Health Information.Best wishes
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