Gabapentin & TN

Posted , 7 users are following.

I've had TN on and off for a couple of years. I initially took carbamazepine (Tegretol) which proved to be effective but had side effects such that I was prescribed gabapentin ( Neurontin) as an alternative. This has had very few side effects but is not quite as effective as carbamazepine, which is consistent with the literature.

I am currently having an attack of TN and gradually increasing the dosage of gabapentin to a level that will give me pain relief. This is being monitored by my GP and pharmacist. At present, I'm taking a daily dose of 1800mg, in three X 600mg amounts. This is proving to be just enough to keep the worst of the pain at bay but there still remains a localized, nagging pain just below my left ear. I'm able to shave, clean my teeth and eat - all things that prove nearly impossible without drug treatment.

My questions: Do other gabapentin users have similar experiences and would they recommend keeping the dose at this level? The amount taken per day can be increased but I like the idea of keeping 'an eye on the pain level' in case I go into remission and having a higher dosage 'in reserve' for future attacks. Thank you.

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11 Replies

  • Posted

    your idea of taking as low a dose as you can of gab is sound. i've taken 2400 mg of gab for, wow, i bet well over 10 years easy, it never stopped my TN  tho thats not why i'm taking it. lol. i have peripheral neuropathy and that's why i take it. i wish that tegretol worked for you cause that's the ONLY thing that stops my TN. if i may ask what side effects is it causing you? is there anything the dr can give you to help deal witth the side effects? like taking phnergan or zofran for nausea?

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    • Posted

      Thanks for getting back on this one. I took Tegretol for about a year and found it, like you, to be very effective in stopping TN in its tracks!

      One afternoon, I took my 3.00pm dose and went out to dinner at a friend's house. I had 3 glasses of sparkling wine between 6.00 & 7.00, having eaten nothing since lunch. I suddenly felt dizzy, threw up, emptied my bladder and fainted. I came round, was immediately sick again and fitted. My partner dialed 999 & I was rushed off to hospital - brain scan and EEG to check brain damage & any tendency towards epilepsy! 

      All the tests were negative and I was discharged. The neurologist, who became involved in my case, felt I should come off Tegretol as a precaution and take gabapentin instead. His reasons were not based around alcohol, which he doubted had caused my seizures etc., but the lowering of sodium ions in body, something which is a possible side effect of Tegretol and a causative factor in seizures. As I was forbidden to drive until the results of all the tests were completed - the EEG was done weeks later - you'll understand why I was relieved to find an alternative drug i.e. 

      gabapentin.

      Forgive the lengthy response but I wanted to give you the background to the problem. I have, in previous comments to this forum, drawn attention to the the possible interaction between booze & Tegretol  - fitting & seizures are not to be trifled with. Now, I never drink alcohol when I'm taking any drugs. A small price to pay!!!

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  • Posted

    I took Tegretol for a short period and had a terrible reaction to it.  I took the max dose of Gabapentin for a couple of months after gradually increasing, but have just weaned off it because my legs and feet became very swollen.  Soon, I will start Nortriptyline.  I hope that I have better luck with that.  I also take Plaquenil and Methotrexate and have been doing pretty well with them.
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  • Posted

    Hi everyone

    Interesting comments from you all. I'm in my 3rd year if this and take Tegretol at about 600mg day as a maintenance dose and during breakthroughs I crank it up to 1200 to 1600mg day. I need that to have some sort of life. Even so teeth cleaning and shaving is agony. You're right about sodium blood levels and I have mine done every sixmonths or so.

    The only serious side effects I get are skin rash and feeling spaced out. Have often thought about trying Gab but as you've indicated, it doesn't seem to be so effective as Tegretol.

    As I seem to have a "classic" compression of the nerve by a pesky artery, the logical step for me seems to be MVD.

    You said you'd been on these drugs for many years. Would you mind me asking if you have either considered or maybe been excluded from MVD or some other surgical intervention(s).

    Keep safe

    Big D

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    • Posted

      Hi Big D   I haven't been taking the drugs for that long. I started TN about two years ago. I took Tegretol for about eighteen months and have been taking  gabapentin for about 6 months. I know about MVD but it seems a bit premature for me to consider going down that route at this stage. However, if things get worse then some surgical procedure could be on the cards. Thanks Colin

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    • Posted

      Hi Colin, I was just going to ask you the same question about side effects of Tegretol. If I take it on an empty stomach it feels like I've been punched in the stomach. Must take it with food. Had some pretty painful breakthrough pains today but such is life with this crazy thing. I know it's still there which justifies the medication. Oh and BTW, I still enjoy my wine with no side effects. As long as there's food in my tummy.

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  • Posted

    I just started gabapentin a few days ago 300 mg once a day. Obviously that won't be enough but that's what my pain management doctor decided I should try. I've had TN for two years and was only diagnosed a year ago now. I spent last year trying different medications, so far I've tried 4 others and they all failed that's why I'm taking gabapentin now. I'll end up needing a higher dosage but if that doesn't work my doctor will put me on lyrica. Has anyone else tried lyrica before, for TN?

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    • Posted

      Hello Lawrencia

      You said you had not had much success with other drugs. Does that include Carbamazepine (Tegretol)? This is supposed to be the drug of choice by many medics for treating TN.

      Cheers

      Big D

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    • Posted

      Like others, I'm very surprised you haven't been prescribed Tegretol. In nearly all cases where TN is diagnosed, the first drug ( the so called 'drug of choice'wink recommended is Tegretol. 

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    • Posted

      Hello my name is Dan, I'm on lyrica I take 150 MG three times a day. It has helped tremendously, I do feel spaced out a bit but it's a trade off for the pain.

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