How many years can you take Carbamazepine?
I've been taking 800 MG since 2010 and I am still not used to it, though I prefer it over the painful attacks.
My neurologist in France (Lariboisiere hospital) was shock I had been taking it so long and petitioned me to get an operation. My Neuro. here in the USA is concerned about the success of an operation and prefers I stay on the Carba.
I was on Carba for 3 years before having an MVD this past October. I also took Gabapentin (Neurotin) and Amnitriptaline. The side effects from the meds became nearly as debilitating as the pain. Though I am still weaning off the meds, I consider the surgery a success. I am taking less than a fourth of the meds I was taking before surgery and I have no pain! It is important that you have regular blood tests to monitor how the meds are affecting you. I found out that Carba can cause low sodium levels.
I have also learned that many of the meds we take to control TN will no longer continue to work after about five years. I experienced that with the Topomax and Trileptal I took for five years prior to the above-mentioned drug combination. After 5 years, it just no longer worked.
If you don't have it already, get the "Striking Back" book about TN. It has lots of info on drugs, treatments, etc., to help us determine which approach is best for us. May God give you guidance and pain free days!
Juliet, thanks for your reply,
I'll be bringing up the five year effectiveness at the next neurologist meeting as I petition for an operation.
I've talked with people who have been on Tegretol for 20 years at doses exceeding 1000 mg per day. Sensitivity to side effects can be quite variable between patients. But there is no general rule of practice for how long one may be on Tegretol without it becoming ineffective. I've seen numbers all the way between 20 years and 2 WEEKS. FYI, Tegretol was developed as an anti-seizure drug, and is frequently effective for long periods (years) in that population.
I was first put on Trileptal but after 4 months of that, a maxed out dose (increasing every couple of weeks for breakthrough pain), and hallucination-like side effects, I was switched to Tegretol XR (extended relief). By the 5th month on that, I was up to 1200mg a day, again increasing my dose every few weeks as breakthrough pain got worse. I was experiencing horrible side effects, mainly cognitive and zero energy. I had my MVD at that point 19 months ago and am pain free and off all meds now. I can't imagine though staying on those meds for even a year, let alone years. I had a very hard time with the side effects plus the Tegretol interfered with the absorption of my Synthroid that sent me into a state of hypothyroidism despite higher doses of Synthroid. Also, it always controlled pain pretty well for a week or two but then the pain would start to break through more and more to the point where it was intolerable and I would always have to increase my dose. I didn't even realize how much of a fog I was in until I weaned off my meds. I would advise you to at least look into the surgical options, especially the MVD surgery. It gave me my life back. Do read the book, "Striking Back" as suggested. It's an awesome resource for TN patients. The neurosurgeon, Dr. Casey, who co-authored the book did my MVD surgery.
I have been on carba for 4 years now, and i is still controlling most of the shocks, as long as I
stay away from triggers. My only noticeable side effect is low sodium, which is really easily fixed. Why was your dr shocked, osprey? Seems to me meds are the preferred option most of the time, since there are various success rates on surgery. Many of us cannot have surgery anyway.