Length of time on Tegretol

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Naively when I began taking Tegretol I expected it to be for 2 weeks only as this was how long a flare up usually lasted. Three months on I am still taking it as the flare up has been continuous. Can I please ask fellow sufferers what the longest period of time is that they have been taking Tegretol continuously?

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  • Posted

    Hello Anne, the other name this drug is known as is carbamezapinr. I took a bad reaction to this when I first started taking it 4 years ago. I was then given oxcarbamezapine and take 750 mg a day with permission to take more if I require it. I also take 200mg of Lamotrigine. I had the glycerol injection 4 years ago, which had a few adverse effects that I still experience. They have said MVD is the next step but too many reports I have read regarding adverse effects, I am not inclined in anyway to allow this procedure. The drugs help me manage this condition, albeit I still have small episodes of pain. I also take blood pressure tablets and Fuexitine to help my moods as TN does make me feel quite down at times, and this drug keeps me on SN even keel. I know if I had to stop all drugs I would experience withdrawal symptoms which I don't even want to contemplate. You have to do what makes life liveable.

    Best Regards to you All.

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  • Posted

    I started on tegretol in January 2016 gradually increasing from 1 tab (100mg) per to 5 tabs in March - that kept it well under control so from July last year I have been reducing by 1 tab a day about monthly as long as no symptoms. Eventually by November, I was down to 2 tabs a day (morning and evening) but not reduced any further yet.  I hasten to add that I do all this in consultation with my GP who is very supportive.  So, in short, I've been on it just over a year so far - hopefully I reduce further and come off it - I was able to stop medication (Lyrica) altogether in 2015 for about 4 months then the symptoms returned.  Just one tip I can give and that is to make sure you take your tablets at regular intervals (i've set an alarm on my phone) so that you have a constant level in your blood at all times.  Heather

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  • Posted

    Dear Anne, I am so sorry that you are suffering from Trigeminal Neuralgia. There is no real way of knowing how long it will last. In the first years, TNA may last 3 or 4 months,however,as years go by, the episodes will begin to last longer with shorter periods of remission.   I am 57 years old and have been living with TNA for 30 years,  The longer you take tegretol, the less you will feel the side effects. I have been on 1000 mgs for 6 months, but often will have to up the dose of tegretol to the maximum amount of 1200 mg. In the last year and 1/2  I have been unable to disconinue use all together. At best i take 400mgs. As years go by, remissions become far and few inbetween. I have gone many years without medical insurance,but now I am able to do what needs to be done. i finally have an appointment with a neurosugeon and hope I will be able to get the microvasular decompression. My fear is that I have waited too long and that surgery may not be as successful for me as now I also have atypical trigeminal neuralgia. Hopefully, you will be one of the lucky ones that will see attacks years apart,  However, if you are not, please do not try to live your life in pain and on pain meds. Learn everything you can, including the search for good tna surgeons in your area.  God Bless

     

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  • Posted

    10 years. I started with 200 mg every day, and gradually increased the dosage until I was taking 1600 mg every day, for a year before my MVD surgery. Being off the medication is almost as terrific as not having pain.
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    • Posted

      Recovery was pretty easy, as long as you do as the surgeon says. I'm 45, and it took me 2 weeks to return to a desk job. After about a month I was near 100%. Hearing was reduced in one ear for about 3 weeks, as if there was water in it. Now it's fine, and the only clue that I ever had surgery is the scar, and very mild numbness on that side of my face.

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  • Posted

    Anne, in my experience Tegretol was not something i could start and stop. I had to keep taking it for the full year that i suffered with TN.  I took it all the way upto 4 weeks post surgery based on my surgeons instructions.  I started with a low dose of Tegretol , around 400 mg / day and eventually the body got used to it and that stopped working effectively so by the time of surgery 11 months post starting Tegretol i was upto 1000 mg/ day. That's when the meds started to severely interfere with my day to day funtion. Tegretol is a medicine that controls nerve sensitivity, it slows down the nerve funtion hence controling the pain signals. Teg has to be in your system for a while and continuously to work. It's not like a pain killer that you can take whenever you have pain. I found that through my personal experience and also of several neurologists who advised me of how i need to be taking the medication.

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    • Posted

      Saaz, you did not mention how successful the surgery was.How are you feeling now and could you please let me know how long did you live with TN and how was the recovery? Thanks

       

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  • Posted

    Hi Anne

    You'll find lots of variations in people's experience with carbamaz (Tegretol). Some have severe adverse reactions very quickly and some are not badly affected. I have been on it for about 2years, and never stopped it. About 600-800mg per day for normal maintenance and up to 1600mg day for breakthrough periods which might last a couple of weeks in my case. My adverse reactions are limited to bad facial skin rash and feeling a bit groggy on the high doses. Regular tests show liver enzymes and everything else is ok. Don't have reduced blood sodium (hyponatraemia) which can be a problem and should be treated.

    You can't just "stop" the drug because of risk of seizure, you have to reduce gradually.

    If I didn't have this drug I'd be jumping out of the window: it's the only one that works for me to suppress the pain - doesn't get rid of it, but does dampen it down effectively so I can eat and keep teeth clean. But when in breakthrough periods, teeth cleaning is a no-no so use TePe interspacers. Can't even swoosh mouthwashes around my mouth if pain is too bad.

    Have got great MRI pics showing classic compression of the nerve at the root by branch of cerebellar artery. Booked up for MVD, can't wait.

    Cheers

    Big D

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  • Posted

    Hi Anne i'very been on Tegretol now for about 3 weeks i'm taking 300mg a day! Out of pain but wind eating can stir it up a bit! I'm still think it might be teeth? May just take one more visit to dentist to double check even though I know deep down it can't be? Maybe need to up Tegretol? Last flare up didn't need to take for long before all pain twinges etc went away! Also lucky have no side effects!

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    • Posted

      Hi fy ffrind

      You're a lucky lady to have good effects from 300mg per day. If you start to lose sensitivity you can start to crank up the dose but just use a small increase daily until you get the pain relief effect. As you probably know it doesn't work like regular "pain killers", you have to build up a level in blood and keep it there for best effect.

      If I go from (say) 10pm until about 8am then my pain has returned already. So, I set alarm for 3am and start daily doses at 8am. That seems to work for me. Mind you, everyone is different so don't take my experiences as being good for you as well.

      Good luck

      Cheers

      Big D

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    • Posted

      Hi army I know what you mean sometimes I leave too bigger gap between doses and I start to get twinges! Think I will set alarm so I pan out does evenly, will see how that goes and may up dose to 400mg! Do you think spacing doses out evenly is the best way to take Tegretol?
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    • Posted

      Hi Welsh Lady

      Yes, you should get best effect to space it out evenly over the day with maybe one in the early hours too to keep the levels up. Just see how you go. Be careful you don't start to feel woozy or get other adverse effects, especially if you're working/driving. Everyone is different in terms of their effective dose and their tolerance of this drug.

      Nos da!

      Big D

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    • Posted

      I figure that if it's a dental issue the pain would be different. Surely, if a tooth is rotten,  the pain would escalate to a point that it would be obvious. And the dentist/endodontist/oral surgeon would find it. This TN pain, for me, is consistent and pretty predictable. Plus, the Tegretol keeps it under control. So if your teeth check out fine, then accept the TN diagnosis. BTW an oral surgeon diagnosed my TN. There's nothing like TN pain. Every time I read these blogs and read about everyone's experiences, it reinforces my confidence in that diagnosis. Eating always brings on a flare. Give up on the dental thing. It's TN. 🙁

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