Trigeminal Neuralgia - do the Tegretol side effects get any better?

Posted , 3 users are following.

hi all,

looking for a little advice? I have been diagnosed with TN for 3 years now and at first i was fine to just take tegretol / carbamazepine (300-400mg a day) when i had flare ups but the last 4 months i have needed it daily for the constant ache, burning, pulsating pain i have now (along with the flare ups of lightning bolt pain i have sporadically) i am struggling with the side effects - i am just so out of it! i am slow, confused, v forgetful, lethargic, numb along with some double vision and issues with concentration. Does it get better ?? honestly i am struggling to do my job and driving it abit scary as my reactions and thinking is so slow.

how do people do this!


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2 Replies

  • Posted

    I've had Trigeminal Neuralgia for more than a dozen years (2010) though I didn't get an official dignoses until 2016. I have it on both sides (and both typical a.k.a the lightening bolt pain and atypical a.k.a the constant pain on both sides) and had an MVD in 2017 on the left side. I used to take Carbamazepine and it caused the same issues for me along with slurred speech, balance issues, and dizziness to the point where people thought I was drunk. And no, it doesn't get better. I suggest you ask your doctor about Oxcarbazepine/Trileptal instead. They're from the same family but I have zero side effects from it. I take 1800mg a day (600mg every 8 hours). They actually started me on 150mg three times a day and upped it to what I take now. It's the best TN med I've ever taken with the least side effects and also works the best. I used to take 900mg a day of Carbamazepine, for reference. Also, do you take a secondary? I take 40-80 mg of Baclofen a day. I also do acupuncture 2x a month and highly praise acupuncture (give it 3 trips before making your mind up if you decide to try it, but it noticeably helps. If I skip an appointment it becomes really obvious as my pain ups. It really helps control pain). Acupuncture doesn't hurt. The needles are so small you just feel a tiny poke when they go in, but they don't actually hurt. You get super sleepy afterword though and I tend to take a nap at home after an appointment lol. Hope this helps and if not, I hope you find something that works better for you!

  • Posted

    hi i get botox injection every 3 months. I still am in constant pain and have days where pain is beyond belief. It really has been a game changer though. Before i wanted to jump out of a window all of the time. I also take muscle relaxers. Vitamin D3, BComplex, Vitamin C-along with a multi vitamin. it's a nightmare though I could be having a conversation with someone at a level 10 with pain and they have no idea what I'm going through. When it's so bad though anyone who has this condition knows you're in a fetal position . The pain is beyond belief past anything I've ever experienced. feel better.

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