Hi, I'm new on the forum and wondering if anyone has had experience with carbamazepine for treatment of TN . . . and any comments about it. Bill
Bill -- if you run a search on Carbamazepine or Tegretol in our window at the top right, you'll find a ton of information and patient experience with the drug. It's generally considered to be the gold standard against which other medications are compared, but its side effects can be very extensive and not everyone can tolerate it.
Regards, Red
Thank you, Red. I appreciate your reply.
Bill
Hi Bill, I am currently taking 1300mg's a day and its doing the job for me. All though...its right on the edge as some push through pain does occur daily. My side effects aren't to bad. I make sure I eat something whenever I take it and so far no stomach issues. It makes my hands occasionly shake and has given me some twitches in them I don't like. Makes me tired all the time. I seem to tolerate it quite well as long as I don't overlap my 3 times a day time intervals. If I do that, I have to much in my system at one time and I'm pretty wasted. Definetly can't drive a car. I am able to do may job so far, but would be concerned if I had to up my meds as it might put me over the edge of normal function.
I do have my blood checked on a pretty routine basis and so far so good on my levels.
Good luck Bill!
bob said:
Hi Bill, I am currently taking 1300mg's a day and its doing the job for me. All though...its right on the edge as some push through pain does occur daily. My side effects aren't to bad. I make sure I eat something whenever I take it and so far no stomach issues. It makes my hands occasionly shake and has given me some twitches in them I don't like. Makes me tired all the time. I seem to tolerate it quite well as long as I don't overlap my 3 times a day time intervals. If I do that, I have to much in my system at one time and I'm pretty wasted. Definetly can't drive a car. I am able to do may job so far, but would be concerned if I had to up my meds as it might put me over the edge of normal function.
I do have my blood checked on a pretty routine basis and so far so good on my levels.
Good luck Bill!
Thanks for your reply, Bob. Do you mean that you can't drive at all while on this med, or only when you get too much in your system?
Bill
In some US States, I have heard that being prescribed Carbamazepine above a defined threshold level is grounds for medical suspension of your drivers' license. This is one reason why people with seizure disorder frequently have problems with transportation. Your doctor's office should know if such provisions apply where you live.
Regards, Red
Carbamazepine is generic for Tegretol which is a front-line drug for the treament of TN. So, you can search for Tegretol and find that tons of people are/have been on it. I was on it for 7 years with somewhat good luck. My symptoms just kept getting worse so we had to add other meds to it. Toward the end of the time I was on it, I was taking around 2000 mg/day. Some people take more than that. By the end of the time I was on it, I was on a number of other meds too, but didn't know what to go down on to try others. I ended up having a Cyberknife procedure - which I"m lately finding was a mistake as my symptoms are back and worse than ever before. But, I was symptom free for two and half years. Good luck!!
Bill 600mgs did the trick for me, terrible constipation though! I was ok driving etc
only when to much in my system. Im just not used to the sudden increase.
Bill said:
Thanks for your reply, Bob. Do you mean that you can't drive at all while on this med, or only when you get too much in your system?
Bill
Oh Great! :) I know its not funny...but thats getting serious
Richard A. "Red" Lawhern said:
In some US States, I have heard that being prescribed Carbamazepine above a defined threshold level is grounds for medical suspension of your drivers' license. This is one reason why people with seizure disorder frequently have problems with transportation. Your doctor's office should know if such provisions apply where you live.
Regards, Red
Finally...answers the question about constipation...thanks
elstep said:
Bill 600mgs did the trick for me, terrible constipation though! I was ok driving etc
It worked beautifully for me despite the side effects (dizzy, sleepy, forgetful, etc) until it caused my WBC to fall. I'm in the process of weaning off of it now and probably won't be able to return to it because of the significant impact it had on my count. My best advice is to be sure to get regular blood work to keep an eye on this issue and prevent any problems with your immunity!
I have dizziness and drowsiness and to a lesser degree nausea. I have an appointment with a doctor who does botox injections for TN. I'll see what he has to say about his success rate. I want to get off this drug if at all possible despite that it has gotten rid of my pain 100%
Also, I want to thank everyone who has replied to my original post. I've read all replies carefully and appreciate the thoughtfulness of everyone who has replied.
Bill
a1b2c3 said:
It worked beautifully for me despite the side effects (dizzy, sleepy, forgetful, etc) until it caused my WBC to fall. I'm in the process of weaning off of it now and probably won't be able to return to it because of the significant impact it had on my count. My best advice is to be sure to get regular blood work to keep an eye on this issue and prevent any problems with your immunity!
I was on tegretol/carbamazepine for four years at multiple levels. The best thing for me was extended release. The only side effect I had was balance issues ever now and again. I was on Lyrica, all the tricyclic antidepressants, pain pills all the way to morphine and nothing worked like tegretol. What happened to me was I got to the point where I was on so much tegretol that I was becoming disabled. I was worried I could not work. This was during the end of my fourth year. I ended up having an MVD which I am thankful for. If I had known now what I know then, I would have went for the MVD on the day I was diagnosed.
raquel drumb said:
I was on tegretol/carbamazepine for four years at multiple levels. The best thing for me was extended release. The only side effect I had was balance issues ever now and again. I was on Lyrica, all the tricyclic antidepressants, pain pills all the way to morphine and nothing worked like tegretol. What happened to me was I got to the point where I was on so much tegretol that I was becoming disabled. I was worried I could not work. This was during the end of my fourth year. I ended up having an MVD which I am thankful for. If I had known now what I know then, I would have went for the MVD on the day I was diagnosed.
Raquel, I'm so new to all of this that I don't know what MVD is. Can you explain, and did it take care of the pain completely?
Bill
Here is a great explanation http://www.mayfieldclinic.com/PE-MVD.htm. It is the microvascular decompression. I had a clear MRI but when I went for the surgery, they found out I had quite a few twisted veins around my trigeminal nerve. Yes, I have been pain free since I woke up from the surgery. Now, I do have a side effect- double vision which is not fun but as I have said before, I would do it again EVEN if they told me I would have the double vision knowing what I know now. Once you get in the loop of this illness, you think you are handling your life, etc. It is once the pain is gone that you realize how you actually compromised your life.