Dual sided TN? Carbamazepine dosage

Posted , 6 users are following.

Hi All, 

I am new to the group, I have had TN for about 3 years. I am lucky enough to have it on both sides, it doesn't just affect ones side. From what I have read I seem to be in the minority when it comes to this. It is currently controlled by carbamazepine, I am in a flare up now so I think I will have to increase my dosage AGAIN! I am currently taking 500mg twice a day. What kind of dosages do other people take? My Neurologist hasn't given me a straight answer of what my maximum dosage will be, I think that all will depend on my kidney function.

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15 Replies

  • Posted

    I have a bad view of neurologists.  Mine argued with me when I was just trying to find out what my options really are and he refused to tell me. I found out on my own via the internet and the TN specialist in my area who is a neural surgeon, not -ologist.

    I got exactly what I needed from the surgeon. He does a couple of things like decompression surgery and radiofrequency thermal surgery.  I did the second option because I have MS.  BUT he likes this surgery better anyway because it is less risky.  

    Did the surgery, got off drugs and am looking into options like some kind of medical marijuana for when it comes back.  Oh, yes, it does come back.  They don't have a cure...either drugs or a surgery that is usually limited in how long it lasts.  BUT after surgery, all pain scare is over, drug free and much happier.  It isn't perfect, I have a numb spot on my face making it hard to eat AND some people get amnesia delorosa on their face( I had it for a few months but no more - (look it up) BUT the benefits win for me.  I say do whatever it takes to give you a pleasant life.  I am all for a pleasant life without suffering.  

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  • Posted

    Megan, I feel for you having this terrible condition on both sides of your face. Mine was just on the right side and I remember all to well, the pain and struggles of living with the condition.

    Carbamazepine was the first med I was put on (of about 5 all together) but I came out in a rash which meant I had to stop. I found it was very effective in keeping the pain away, but I was on such a high dose that I was very spaced out a lot of the time. It was over the recommended maximum, but my neurologist said that as long as I could withstand the side effects, each individual has their own tolerance and there is of course other problems that can occur from having too much.... It was a while ago but I'm sure it was 15 ml, 3 times a day! (5ml is 100mg).

    He said I was one of the worst cases he had come across. From what I understand, these anticonvulsant drugs eventually become ineffective over time anyway, so surgery may be inevitable. I was put on gabapentin, pregabalin, phenytoin and I'm sure there were more they tried but I can't remember now.. A combination of two at one point as this can also work for some people. It's all very much experimental, unfortunately.

    Turned out my TN was caused by arrested hydrocephalus (trapped fluid on the brain) which had caused, somehow, stretching of the second branch of the nerve which they saw from the MRI scans i had. This caused the nerve to misfire and send the excruciating pain signals, which I first started to get at the age of 28, despite the fact I would have been born with hydrocephalus... Strange I know...

    I had surgery to remove the fluid on my brain (endoscopic third ventriculostomy) and have not since, had anything like the old TN pains I used to get. 

    A couple months after the surgery and I was almost back to normal. I could eat and drink without fear of an attack. Such a relief! I have since developed tinnitus, which I've been told is not related to the operation I had, but I would've taken tinnitus instead of TN any day, even if it was!

    Ask about surgery, as I honestly believe it's the best way to help against this horrible condition. There's a few which you've no doubt looked into yourself and you'll be advised as to which would suit you best.

    All the best with your journey to becoming pain free!

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  • Posted

    i am on 300mg in the morning (6am) and 300mg at night. thinking i might need to add another 100mg at 2pm though as i am getting breakthrough pain about 4pm and its quite severe burning.  I am drinking lots of water on the theory that it will help my kidneys cope. i also take Warfarin for an artificial heart valve and Tegretol and Warfarin do not go together well. Hard to keep track of the meds sometimes... esp when dopey from taking them.
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  • Posted

    Oh, and, i will be trying acupuncture next Saturday. Can report back if you are interested. Apparently it can take up to 6 weeks to work properly.
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  • Posted

    I am very interested in the accupunture. I have been thinking about trying it for years  for my migraines but have been hesitant that it will cause a flare up of my TN but since I am in a flare up now I guess I have nothing to loose. Let me know how it goes. 
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    • Posted

      Would love to know if it helps.  I am looking for alternative possibilities for when it comes back.  Because acupuncture costs too much I am waiting to see if it helps before wasting my social security monies.
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    • Posted

      Just got back from my first acupuncture session. First thing to know is: it didnt hurt. I dont know yet if it has done anything for the TN as it takes about 4 weeks before you notice anything apparently. However, the guy did my back as well as i have been having constant pain from that. I think the acupuncture did a fair bit of good even on today's session for that issue anyway.I will report back after 2nd acupuncture on Thursday next.
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    • Posted

      I have been to two visits at the acupunturists...so far so good. I actually had a headache last night when she started so she made that her top priority, about half way though inserting the needles she asked if my headache was gone, and I had to think about it b/c it was and i didn't even notice! my TN has been doing better, i have been avoiding triggers so that is helping too. I have another appt in a few days!
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  • Posted

    The receptionist told me $135 for the first treatment and $100 after that. Acupuncturist said good results for many but not for everyone and 6-10 visits required so not cheap. i will get back to you after next Saturday for results of my first session.
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    • Posted

      just had my second visit to the acupuncture clinic. I can now put moisturiser on my face and wash my face which i could not before. TN is such a willow-the-whisp thing though that i am not sure if its the treatment or just a temporary respite. Next visit on next Thursday. Will get back to you then. Needles did not hurt. Took about 45 mins.
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    • Posted

      Thanks for the feedback.  Look forward to future ones.  I got a medical marijuana card and an idea of what to get. It is an oil that a doctor used to treat a nerve pain condition.  She said it worked. I am going to look into it and will let you all know about it.  Of course, I had a radiofrequency surgery and the TN is not bothering me at all but when and if it returns, I will try the oil.
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  • Posted

    PLEASE, PLEASE DO NOT take your dose all crazy. get a doctor's advice first. i did thant and my TN got worse that i ended up  in the hospital. i have had TN since 2011 and never have i been subjected to so much pain since i started taking tegretol without a doctor's advice so please be careful. i couldn't talk or eat for days and everytime i think about it i feel like crying and this happened twice in a month everytime i suddenly changed my dose. i stopped doing that and my stabbing trauma never happened again. i only get tiny shocks to my jaw every once in a while but i am still  on the tegretol. i also take b complex and magnesium daily
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  • Posted

    Hi Megan. Sorry to read you suffer this on both sides

    I've had tn on my right side for around 9 yrs controing it Cabamazepine, i became restant to this over time the top does being 1600 mg per day. I later went on to Gabapentin wich again i became restant to.I'm now taking 1600mg Carbamazepine and 2100 mg gabapentin. I'm booked in at QE Birmingham 2nd November for the injection,will let you know how i get on 

     

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  • Posted

    Hi,

    I have TN on both sides too! I feel your pain! 

    I currently take amitriptyline for mine. 

    Hope you feel better soon wink

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