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This TERRIBLE Trigeminal Neuralgia...OMG!

Posted , 3 users are following.

britany85665
britany85665

So on March 13th, I go to the ER with these terrible burning sensations to my face.  My head has been hurting for about a month now, then 2 weeks later came face numbness and tingling then the face starting burning.  The pains felt like I was being shot in the face or I was struck my lightening.  The pains are literally disabling.  ER diagnosed me as having Trigeminal Neuralgia.  I never heard of it before.  Seen my Primary Care Doctor; she agreed and educated me on it.  She was able to get me into a neuralogist the next day.  My neuralogist pretty much explained a blood vessel irritating or moving against a or some nerves.  Neurologist explained that a MRI will be done so ensure there werent any other findings.  

I am truly scared and bothered.  I just battle Adenoid Cystic Carcinoma Cancer last year, and now something new.  I just want relief! Sometimes the attacks are so bad, all i can do is just lay theresad  Im currently taking Tegritol and Neurontin medication.  Im day 2 of my medications, I hope they start running its course, because they are not doing much for me.  Any further info on this condition is much appreciated.  I feel for those who are battling this horrible thing with me; but we shall OVERCOME it!!

1 like, 3 replies

3 Replies

  • sandy5221948
    sandy5221948 britany85665

    Posted

    How long do your attacks last each tme?  Hours, minutes?  Where in your face?  Do the attacks happen mostly at night, or during the day?
  • army183
    army183 britany85665

    Posted

    Firstly, it's sad that we have to welcome you to our terrible TN club. But, you do seem to have gone down the right route for clinical diagnosis in a rather short time. - and this is very good.

    It will take a while for the Carbamaz (Tegretol) to have an effect, it has to build up levels in the blood. You take it all time. It just if you are having an attack. The MRI will sort out your diagnosis without doubt and then your neurologists will be able to offer some treatments for you. There are about 4-5 of these, and you'll learn that somebare better than others depending on whether you really do have an artery pressing on the nerve route. If that is clearly so from the MRI results then the options for success are greatly improved.

    In the meantime you will get onto that regular cycle if Tegretol about 4-6 times a day depending on dose. It does work but some people have significant side effects.

    Good luck to you and with your MRI

  • nancy80025
    nancy80025 britany85665

    Posted

    Hi there. I think you have the best thing to treat this disease and that's a positive outlook. You can beat this. I have just had mvd surgery after suffering for 2 years. Even when in a period of remission you are so frightened of the next one you feel a nervous wreck. There are many horrendous stories of people's suffering out there which I foolishly watched and scared myself even more. I can only speak for myself but when given the chance of surgery as terrifying as it was the thought of suffering from TN for the rest of my life scared me more. I can fortunately say my surgery was textbook stuff by putting the gauze between the vessel and nerve. I have suffered hearing loss in one ear but this happened a couple of days post surgery so hopefully will return but I consider it a small price to pay to get rid of the pain. It is an awful condition as no one can see anything wrong with you but at times you are frozen to the spot in the most unimaginable pain. You can't walk talk or anything until it passes and this makes you feel like an idiot if it's in the middle of the street. Tegretol was the only medication that helped me. Pregabalin and gabapentin did nothing. Another annoying thing is when folks tell you they've had it. No they haven't. They have had a bit of facial pain but nothing on the pain scale touches this. I know how alone and terrifying it is and send you and every sufferer of this nightmare disease my love and best wishes

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