Trigeminal Neuralgia

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So I've had Trigeminal Neuralgia for about 9 years. Well I've always had electric shocks on the right side from my head to my have. I also have it in my teeth, gum, lips. Sometimes I can't touch my lips with water, lip gloss nothing, nor brush my teeth. The pain is terrible. Now I get shocks and my head and ear feels like its on fire. I just started going to pain management. But this & back and hip pain. Well they not much help. I see two Men who don't hear me out so I can explain the pain. They just rush off. Well they want me to do a nerve conjunction test & I'm frightened. I don't need none bothering them nerves, that pain disables me. What should I do? Have anyone had this tests? He tells me what what he's going to do as far as treatment, not giving me room to disagree. Things that the Doctor prior already tried.

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  • Posted

    I HAVE THE SAME THINGS GOING ON AND THE PAIN IS SOMETIME UNBEARABLE. I SEE PAIN MAGEMENT DRS. AND THEY ALWAYS WANT TO DECRESS MY PAIN MEDS EVERY MONTH.

    DOES ANYONE DEAL WITH THIS PROBLEM EVERY MONTH. I WISH THEY WOULD UNDERSTAND MY PAIN INSTEAD OF WORRYING ABOUT WHAT IT LOOK LIKE ON PAPER. DOES ANYONE HAVE ANY HELP ON WHICH KIND OF PAIN MEDS SEEM TO HELP THE MOST. I'm ON MORIPHINE DAILY AND IT KEEPS MY PAIN AROUND A 7. I TAKE 60 mg twice a day. WHAT IS A NORMAL AMOUNT FOR YOUR PAIN?? THE DRS.think I'm on way to much. I've taking IT SO LONG I'm not sure what to change it too. PLEASE HELP.

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  • Posted

    Hi, I'v had trigeminal for 8 yrs., awful shocks in left side of head face and mouth, left side of tongue is most painful, Striking Back is a book written by 2 drs, that had trigeminal, great info. My Neuro. Put me on oxcarbazepine , it was all that would stop the shocks , I was on it 5 years and it was causing liver problems, I put topical benzocain, phenol , and lidocaine. I could numb my mouth enough to eat and talk at times. 2 yrs ago, I heard a special on news about a little girl with seisures, she was about 3. Had 300 seisures a wks, could not function, cbd oil lowered her seisures to 2 a day she can function as a healthy child., make a long story short, I knew the only meds drs have for trig. is seisure meds, so I called co.in Colorado where cbd oil was made ordered it , and used in under tongue, would hold it there and let it be absorbed, in 3 wks I could tell a big difference, the rest is history, 2 droppers daily has given my life back. Its at the health food store now., give it 3 to 4 weeks to work. Wish you the best. ,

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  • Posted

    Hi,

    I just saw your message and I just wanted to say to you don't give up there is a treatment for this horrible condition.

    I don't have TN but I watched my sister suffer from it for 5 years. it started with occasional jaw pain like a bad tooth each and progressively became worse to a debilitating level. she couldn't work, she couldn't study, she couldn't care for her kids, she couldn't talk or ear it was horrible. She was on very high dosage of Lyrica, which didn't stop the pain only reduced it by 25-30% and made her sick and foggy. by the end of 2017, the flashing electrical shock pain was so bad even with medication that she start to get blisters around her lips and the slightest movement of her face will trigger the pain. by Jan 2018, she was so weak and living only on little liquids she drinks with straw after she takes oxycodone. In March 2018, She had microvascular decompression (MVD) surgery and she got her life back. 6 weeks post OP she was off all medication. She is happy, back to her normal life. she gets flare ups sometimes but no way near as bad.

    Here is link discusssing this surgery. https://youtu.be/MDaMsJz8Rp4

    I hope my comment here gives you hope and comfort. your not alone. I saw what this disease did to my sister and what she went through. it is not easy and a lot of DR and family members cannot understand the magnitude of TN's pain. I hope you find your way out of this.

    Fawzia

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    • Posted

      THANK-YOU SO MUCH FOR THE INFORMATION ANY THING HELPS I'M AT ROCK BOTTOM. I'M GOING TO ORDER SOME CBD OIL IN THE MORNING. COULD YOU GIVE ME THE INFORMATION ON THE OIL. WHERE DO I ORDER IT? I KNOW THERE ATE A LOT OF PLACES YOU CAN GET IT. I'VE HEARD YOU NEED TO KNOW WHERE IS THE BEST PLACE BECAUSE OF THE STRENGTHS AND IF IT'S A GOOD QUALITY. I'M SO THANKFUL YOU TOOK THE TIME TO ANSWER ME.

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    • Posted

      Hi,  Google Charlotts Webb by the Stanley Bros, located in colorado,  It list the states and health food stores for you, if not close you can order directly from them,  I was so bad I started with 23mg. Mine is mixed with olive oil, they have sml bottle and the large,  when i first started I would  use 1/4 dropper on my tongue, it will stop the shocks, and burning after 3 wks.plus dropper full am and pm, thats using the small bottle, dropper is smaller. Look it up,  it will tell you everything you need to know.  I  was in terrible pain, oxcarbazepine gave me some relief, but this is healthier, full of amino acids.  Let me know how it works after 3 weeks.  Good Luck, Be Blessed.
      
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