Carbamazepine

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HI, i have been diagnosed with trigeminal neuralgia and been put on carbamazepine which i am so very grateful has had wonderful results for the tn but im so exhausted and weak all the time that im not able to do much , have given up work and stay around the house most days . AS ITS THREE MONTHS SINCE IVE SUFFERED an attack should i just be grateful for no pain

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  • Posted

    I suffered for years. I thought it left. I was pain free for a year or so. Then it came back 10x worse and has not left. Im on carbamazepine, and other meds. I still have shocks in between doses, Alot of time I'm sleeping.

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  • Posted

    hello Rosie, I'm glad to hear that the meds are helping and you haven't had an attack in 3 months. Here's my experience on cambamazepine and its my story so everyone reacts differently. I too found relief for a short period with the same feelings of what you describe, after the milligrams continued to go up my side effects did too. My body was starting to shut down on me, wearing catheters for weeks and severe fatigue. Not to say this will be your story but stay aware of how your body is reacting. Let me know if i can be of any help to you. Brock

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  • Posted

    Hi Rosie,

    I've been on carbamazepine for 3 or 4 years now - it keeps the tn at bay. I have a prescription for up to 5 x 100mg per day but thank goodness I have never needed that much. My maintenance dose seems to be 200 per day although from time to time I get break through pain and up it to 3 times a day. Whatever dose I'm having, I take it evenly throughout the 24 hours so I have a steady level of medication in my blood. I have discussed this approach with my GP and she is happy for me to adjust as I see fit, as she says - I know more about it than she does because I live with it!

    So, not for me to advise you but it might be worth speaking to your medic to discuss reducing slowly to see if you can find your optimum dose then the side effects may not be so bad.

    Good luck, Heather

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  • Posted

    YES BE VERY GRATEFUL THAT DRAGON HASNT REARED HIS UGLY VICIOUS HEAD!!! MY PAIN WENT FROM HURTING A BIT TO ALL OUT SUICIDE LEVEL!!!! THE MEDS STOP WORKING AFTER 3 YEARS ALTHOUGH I WAS STILL ON PAIN EVEN ON THE MEDS BUT IT MADE IT BEARABLE, SO WHEN IT STOPPED I OPTED FOR THE SURGERY AND I COULD KICK MYSELF FOR NOT DOING IT SOONER IT GAVE ME MY LIFE BACK NO PAIN AT ALL WHEN I AWOKEN FROM SURGERY! GOD IS GOOD SO HOLD ON AN ALWAYS KNOW MVD SURGERY IS AN OPTION! OH YEAH THE SLEEPINESS FROM THE MEDS WILL WEAR OFF😉

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