Length of time on Tegretol

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.

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

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

 

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.

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.

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

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!