Multiple Treatments have stopped working

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i've had TN for 6 years. I currently take 1800mg of Gralise (time releases Gabapentin), 120mg Cymbalta, 2rounds of Gamma Knife, and stereotactic rhyzotomy (6 months ago) and the pain is coming back! HELP. What do I do now???

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  • Posted

    Through the meds so its coming through all that im sorry i hope i can find a medium im trying cymbalta but so far im not liking it i got this burning sensation on my arms im thinking about going back to oxcabazpine it was ok but it worked for the most part. I will be praying for you i have had this disease for over a year
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  • Posted

    Hi Caroline - My history is similar to yours. I finally tried MVD which unfortunately was unsucessful. Switched to oxcarbazepine (150mgs 2x a day also known as trileptal) baclofen (20 mgs 2xs a day) and norco (10/325 mgs as needed no more than 4 every 6 hours). This "cocktail" is working for me and has for almost 4 yrs - though I've been experiencing some minor breakthrough pain lately.

    I was on such high levels of gabepentin before mvd I couldn't handle brain fog. Oxcarbazepine is a life saver - though baclofen is absolutely necessary for it to be effective.

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    • Posted

      Regular Gabapentin does make me sooo sleepy. I've been on Baclofen for a long time  (I have MS) and I think it made me sleepy in the beginning too, but once I acclimated I was fine. How did you make the switch to oxcarbazepine from Gabapentin (I.e., did you have to ween off Gabapentin and slowly amp up the oxc? I am terrified of "slow" and "weening"! 

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    • Posted

      I weaned down knowing I'd be in the hospital for mvd surgery and access for immediate intervention if needed for relief. I took my last dose of gab rhe day before surgery. I was hopeful wouldn't need to go back on it. Unfortunately I was never fully pain free following surgery but pain of a different nature. I wasn't back on meds until 7 months later with escalation in pain overnight at a whole new level. Your neuro or pain mgt doc will tell you how to taper down. Mine said if changing meds you transition by reducing and replacing so you are taking a combo of both. But talk to your dr so they'll give you the right equivelent doses.

      Also I try to take meds same time everyday

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    • Posted

      PS - Do you go ro pain mgt dr or just neuro? I feel like she does more for me than my neuro but maybe I just like her better 🤓

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  • Posted

    Hi I've had TN/SUNA for 11 years and mine still brakes through at times. My advice is get back to your neurologyst  asap.     Have you tried Lamotridgene I take it with Gabapentine and Carbamazepine.

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  • Posted

    caroline25339,

    I take Gabby 900mg, but can adjust what I needed , then 150 mg oxcarbinazapine, but can adjust

    All @ bedtime. The med can b taken anytime my pain came back, the other drugs others talk about I've never used. My meds were given 2 me by Neurologist, I have bad allergies but no side effects with these meds.

    I have stopped taking Omeprozole (ulcer), for a while bcause read about link to TN. I had none of this awful disease until I started taken that drug.

    God bless

    us and keep us and give us peace

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    • Posted

      Can you take 900mg of Gabapentin at once? Silly me...I'm at 2400mg Gralise (time released Gabapentin) at dinner, but if I go back to regular Gabapentin I'd have to break it up as 600x4 per day (same schedule as my Baclofen). I'll be a zombie, but Gralise copay is $$$ even with insurance. I take my 120mg of Cymbalta in the a.m.

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  • Posted

    Carolilne, so sorry to hear that you are having no luck with keeping the pain under control. I have only been diagnosed for 1 year, but my fear is what happens when the carbamazepine stops working. Keep us posted, and I hope you find relief soon.
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