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MY TN WENT INTO REMISSION LAST YEAR AND CAME BACK 200X WORSE THIS YEAR WITH NON STOP PAIN

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Aleitrafromcali
Aleitrafromcali

I'VE HAD TRIGEMINAL NEURALGIA FOR YEARS. IVE BEEN TO A NEUROLOGIST ALSO. WELL LAST YEAR IT WENT INTO REMISSION FOR A FEW MONTHS. THIS YEAR ITS BACK NON STOP. I GET ELECTRIC SHOCKS FROM MY HEAD DOWN MY FACE AND NOW MY BRAIN, IT FEELS LIKE MY HEAD IS BEING ELECTROCUTED. MY HEAD AND FACE FEELS LIKE ITS ON FIRE, ALL IN MY EAR. THE PAIN IS TERRIBLE. SOMETIMES I CANT TALK BECAUSE MY MOUTH IS SORE, MY LIPS AND TEETH GET BAD SHARP PAINS. I CANT WASH THE RIGHT SIDE OF MY FACE, OR TOUCH MY LIPS, CANT BRUSH MY TEETH. NOTHING CAN TOUCH THE RIGHT SIDE OF MY FACE. DOING THESE THINGS IS A GAMBLE BECAUSE THE PAIN COMES FROM NO WHERE. IM WOKEN OUT MY SLEEP IN PAIN SCREAMING AND HOLLERING. WHEN I TALK I GET SHOCKS. LIFE IS HORRIBLE. I LAY ON THE COUCH ALL DAY IN THE DARK. I CANT DO ANYTHING!! I DONT NO HOW MUCH MORE I CAN TAKE. IM TAKING 600MG OF GABAPENTEN 3X A DAY 400MG TEGRETOL 3X A DAY 600MG BACLOFEN 2X DAY 100MG IMITREX 3X DAY AND IM STILL IN PAIN. I GET A LITTLE RELIEF TO NAP THEN ITS BACK FULL FORCE. IM LIGHT HEADED WHEN I STAND. I FELL IN MY HALLWAY TRYING TO MAKE IT TO THE BATHROOM. I CONSTANTLY BURNING MYSELF TRYING TO COOK. MY HANDS IS SO WEAK AND UNSTEADY, I DROP MY SEASONINGS AND FOOD. MY HEAD SHOCK SO MUCH IT CAUSES ME TO LOSE MY BLADDER & I HAVE TO BE HELPED CHANGING BECAUSE MOVEMENT MAKE THE SHOCKS WORSE. I CANT EVEN SMILE BECAUSE MY LIPS SO SORE. MY DR HAVE A HOME CARE NURSE TO COME IN AND HELP ME. I AM SO DEPRESSED. MY HEAD VIBRATES NON STOP. I DONT NO HOW MUCH LONGER I CAN TAKE. I AM ALSO A MOTHER, WHICH KEEPS ME GOING EVERYDAY FIGHTING THROUGH THIS PAIN. IS THERE ANY MEDICINE THAT WILL ACTUALLY WORK

0 likes, 10 replies

10 Replies

  • geoffrey35113
    geoffrey35113 Aleitrafromcali

    Posted

    No point in sympathizing as it it doesn't help. Exactly the same for me and I was contemplating suicide. My answer: Balloon therapy procedure which I had 3 years ago and absolutely no pain so far and no side effects except for a numbing in the jaw area which has now passed. That's all I can offer in the way of help. There are no alternative medicines or therapies as far as I know because I tried all of them including acupuncture.

    Good Luck.

    • Aleitrafromcali
      Aleitrafromcali geoffrey35113

      Posted

      When I went into remission. My entire right side of my Face & head was numb. I use to drool alot because I couldn't feel anything. Now is just pain. I will ask my Dr about the Balloon. Thank You

  • ernestine_93088
    ernestine_93088 Aleitrafromcali

    Posted

    I feel bad for you I can understand your pain as I too get the shocks. I use CBD and Gab. as needed it helps with the pain. I am reading the book Medical Medium, it has a section on TN and what supplements to take to help with the pain. Hope this helps. Praying for you TN warrior

  • chris78446
    chris78446 Aleitrafromcali

    Posted

    you have to have the op called the balloon i was exactly like you but although there is no cure they can deaden the nerve that causes the pain it lasts till the nerve heals itself and because the nerve controls the side of your face after having my op 14th march this year no more pain

    but the side of my face is numb including my eye

    but i can happily put up with that

    good luck

  • mallory22442
    mallory22442 Aleitrafromcali

    Posted

    WHY DO YOU CONTINUE TO HURT!? GET TO A HOSPITAL (LIKE MAYO CLINIC)that has a really good reputation for neurological Procedures and have the MVD surgery. You can research on the computer for the top neurology hospital in your area. It has saved my life!

  • Aleitrafromcali
    Aleitrafromcali

    Posted

    Unfortunately there is no Mayo Clinic here. I've been to the Hospital many times. Seem they don't no how to treat the condition. I wait in the waiting room for over 8 Hours to be given Ibuprofen and told to Follow up with my Primary Care Physician. Unfortunately no Neurologist in my city takes Medical. So I have to see a Neurologist in a different city. My Doctor haven't gave me options besides the Medication I'm currently taking. I will ask about it at my next Appointment. Thank you

  • maggie80535
    maggie80535 Aleitrafromcali

    Posted

    ITS WORTH GOING TO SEE AN ACUPUNCTURIST LIKE I DID 3 YEARS AGO. I HAVE BEEN IN REMISSION EVER SINCE. I THOUGHT I WOULD DIE WITH TN BROUGHT ON WITH ELECTRIC TOOTHBRUSH.YOU MUST GO 3 TIMES A WEEK FOR AT LEAST A MONTH THEN DECREASE SLOWLY.RESEARCH TO FIND THE BEST GUY OR LADY ACUPUNCTURIST.ASK QUESTIONS.ANOTHER WAY WAS I FELL OVER AND BROKE MYHIP AND TN WENT FOR A YEAR.NOT RECOMMEND

    • Aleitrafromcali
      Aleitrafromcali maggie80535

      Posted

      With my insurance everything is by referral only...I will have to talk to my Dr & see about getting into one...& see if my insurance will cover it.

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