My case is a very mild one so I only take a very low dose of tegretol, Lately I have noticed a diminishing sense of taste. Any of you ever had that? (It isn't diminished enough to keep me out of the fridge yet.) But, yeah, all foods taste bland like they are flavorless.
When I read and heard what some of you are going through I felt like a whiner. I've never come close to some of you even on my worst day. I wish you all strength and peace as you fight this disease.
I've heard that happens on Topamax, so it wouldn't surprise me if it happened with Tegretol.
Yes, that happened to me and smell with Teg. Sometimes you get weird smells too.
Anyone have that on Gabapentin? I get a strange taste in my mouth too.
I don't know if this is answering exactly the issue you bring up, but I found that as my dosage increased, everything became more bland; I retreated further inside myself and nothing held any "taste," whether that meant activities I liked to do, music I liked to hear, food I liked to eat ... everything felt diminished.
So, maybe what you are describing is a version of that?
I suspect that nothing much would surprise any of us when it comes to all of these meds. Thank you for your input and good luck to you.
crystalv said:
I've heard that happens on Topamax, so it wouldn't surprise me if it happened with Tegretol.
I've never heard of Gabapentin. Good luck to you though.
Jennifer G said:
Anyone have that on Gabapentin? I get a strange taste in my mouth too.
Very well could be. Thanks and good luck to you.
wrigley said:
I don't know if this is answering exactly the issue you bring up, but I found that as my dosage increased, everything became more bland; I retreated further inside myself and nothing held any "taste," whether that meant activities I liked to do, music I liked to hear, food I liked to eat ... everything felt diminished.
So, maybe what you are describing is a version of that?
Hi Min, Sure seems to be a lot of side effects with all of these meds. Thanks and good luck to you.
Min said:
Yes, that happened to me and smell with Teg. Sometimes you get weird smells too.
Did you experience an alteration of taste first and then gradually lose taste? Is it all over your tongue, or just on one part? I don't have any information, but my wife is complaining of the same thing (she's been on 300mg tegretol daily since her diagnosis about about 5 ago) and I'm wondering whether it may be the TN and not a drug side effect, because the med sites I've checked barely mention an association of tegretol to ageusia. Based, however, on what some other people have written here, it may be a side effect of any drug used for TN.
Just thinking aloud. Would certainly like to hear back if anyone knows more about this, or learns something new. Thanks.
I am taking Trileptal and am having the taste issue as well as a sense of smell issue. Food tastes different and sweets are sweeter. I have been complaining to my husband that the house smells bad but no one else seems to smell it and it won't go away with febreeze. As the day goes along, the smells go away and I regain my sense of taste but about 15 minutes after I take my next dosage, it all changes.
After reading some of the other responses I am almost sure that it is the Tegretol. It seems like it is in different degrees at different times but with no certain or regular timing. One thing I have done to make food enjoyable again is to eat Mexican style food more often and use more hot sauces and seasonings. I no longer trust my sense of smell to determine if something in the fridge is still eatable and rely on use by dates on the package.
On another topic I have usually been able to go into remission by just taking the pills for a month or two. Now it has been since last October and every time I try to stop taking the pills it comes right back , within just one or two days.
Also it takes longer to work every time I have to restart.
Hope you all are doing well. Good luck.
Yes, we have "challenged" the theory by risking pain and reducing the dose of the tegretol. Sure enough, taste returned--as did the pain.
I'm not surprised about the trileptal. The drug is related to tegretol: carbamazepine and oxcabazapine.
We are experimenting with a switch to dilantin (phenytoin) to see if it treats the pain but leaves taste intact. I will update on the experiment.
Good luck to you both.