I see there have been a couple of posts on this subject in the past. I am fairly new on here and find it very comforting to hear from people that are sharing similar symptoms.
I have Atypical TN and the pain always starts in the molars on my left side. Sometimes the bottom and sometimes the top. As soon as my pain starts to escalate I have a terrible metallic taste coming from the exact place where the pain is. It isn't there all of time but it is not pleasant.
I am looking for other people that share this type of pain and the strange taste.
hi Jane. I am atypical , just started in june of this year after dental work. I too have a metallic taste almost all of the time . I have mentioned it to a few doctors and they just shrug their shoulders. recently it has turned into a bitter taste and I am wondering if this is from the gabapentin, or that I still have a temporary bridge in my mouth ... another thing to worry about .
I don't taste a metallic taste but everytime I change medications that work on the brain, my sense of taste changes. I wouldn't be surprised if it's the medication.
I am on Amitriptyline. I have read that it can be an uncommon side effect. I think I had it before the meds though. Also after dealing with the pain for so many months I have become better at seeing patterns with it. For me, the taste always seems to come right as the pain starts to escalate, and sometimes before the pain starts, but always in the exact spot of the pain. Sometimes on the bottom and sometimes on the top. And the taste isn't always there for me. Its very strange. Do you have pain in your teeth?
golfgirl said:
hi Jane. I am atypical , just started in june of this year after dental work. I too have a metallic taste almost all of the time . I have mentioned it to a few doctors and they just shrug their shoulders. recently it has turned into a bitter taste and I am wondering if this is from the gabapentin, or that I still have a temporary bridge in my mouth ... another thing to worry about .
Thanks for your reply. I have certainly thought about it being the medication. It seems the taste always accompanies the pain though. It isn't always there, it always comes on as the pain is starting. I am on Amitriptyline and I have read that it can be a side effect.
tkal said:
I don't taste a metallic taste but everytime I change medications that work on the brain, my sense of taste changes. I wouldn't be surprised if it's the medication.
I have yucky taste in my mouth too. Sometimes it’s metallic and other times it tastes like I’ve got a mouthful of blood. Blah blah I’m the vampire queen. For me it’s associated with pain:( which is not that great to began with. There are medications that do affect with your senses. You can read the info of side affects of your medications on different sites dedicated to that. Lastly for my self I’ve notice that the pain has heighten my senses, like noise, light, smells, and touch. Not sure if that’s true for all or if it’s just me.
Mine is associated with pain too. I had it before I started any medication. I also find that the pain heightens all of my senses. It does taste like blood but there is no blood. My pain either comes on in my lower molars or my upper molars. That taste is always exactly where the pain is coming from. Now that I have been dealing with this for awhile I am even noticing that taste come on right before the pain starts to esculate.
Kari said:
I have yucky taste in my mouth too. Sometimes it's metallic and other times it tastes like I've got a mouthful of blood. Blah blah I'm the vampire queen. For me it's associated with pain:( which is not that great to began with. There are medications that do affect with your senses. You can read the info of side affects of your medications on different sites dedicated to that. Lastly for my self I've notice that the pain has heighten my senses, like noise, light, smells, and touch. Not sure if that's true for all or if it's just me.
The metallic taste in my mouth seems to come right from a top upper molar which is annoying me and hurts to bite down on. It feels like something is on my tooth. It makes me wonder if there is something on my gum, under my tooth. This is all very odd. I read that tegretol can cause a metallic taste, but why does it specifically seem to come right out of that tooth???
Mine acted that way too. I was never on Tegretol. I am on Amitriptyline but the metallic taste was there before I started the medication. That metallic taste always tasted like it came right from that specific tooth.
I just looked it up on google "metallic taste with trigeminal neuralgia"
It does seem that others' have it and that it is or can be connected to damaged nerves sending wrong signals.
Hi Jane, old discussion but thought I'd add my two pence worth. I have had the metallic taste very strongly in the 'danger zone' of my mouth since the very beginning, long before I started medication. In fact Tegretol eased some of it but I still have it now, on 800mg of Tegretol
I have it 24/7, it never goes away, although there is maybe a ten minute window in the mornings before it has built up to full strength.
Mine started like a strong feeling of touching a metal pencil sharpener with my tongue. I could taste/feel that electric shock quality right down the right-hand side of my mouth. I christened myself the woman with the electric teeth for that reason and described it to my doctor as that when I first went to see him. After 600mg of Tegretol the sensation of electrified teeth left me, but I can still taste the flavour.
I told the doctor that I had a theory that as far as the (crossed wire) nerves in my brain were concerned my teeth were electrified, hence it reacting in the two filled teeth I have on that side, and also why I got terrible shocks when I put in my nightguard every night (there's metal wires to hold it on). They have largely gone now, but sometimes I can still feel them under the surface, just itching to break out. Nerves produce electrical impulses so I don't think it's odd that screwed up wires in your brain produce that sensation.
I don't have this anymore. Once my medication started working for me it did go away. Proof to me that it is part of the neuropathy or neuralgia that I have. It always centered around the one most painful tooth that was the origin of all of my left side ATN.
Many of us ATNers seem to have this with pain in the bottom two branches.
Definitely one of the strangest symptoms I have had.
Thanks Cleo. That makes sense given the locations of my ATN. Pretty strange stuff. It is always reassuring to know that other people have these crazy symptoms.
Good to know it may go away completely, Jane. Mine certainly changed from flavour & sensation to the flavour of metal only after 600mg, so I'm hopeful that when my new dose of 800mg hits 'the golden window' (9 - 12 days for me) then I may see even more improvement and start to lose the flavour too. It's not pain, but it's still annoying and helps to draw attention all the time to the fact that you're 'not working right'.
justjane37 said:
I don't have this anymore. Once my medication started working for me it did go away. Proof to me that it is part of the neuropathy or neuralgia that I have. It always centered around the one most painful tooth that was the origin of all of my left side ATN.
Many of us ATNers seem to have this with pain in the bottom two branches.
Definitely one of the strangest symptoms I have had.
There's a taste nerve? Who'd have thought it? Must look that one up. Isn't it odd though that it makes us taste metal? I mean, why metal? Why not cinnamon or violet or salt?
Cleo said:
The chorda tympani nerve gives us the ability to taste.
I have atypical TN and used to experience this much more than I do now. One day when it was quite bad, I was walking by the perfume counter and noticed that the metallic taste was replaced with something more, well, floral. Much better. That began my journey into how different scents affected my symptoms. It can be something worth paying attention to.
OMG, I have it too. It does feel like something metal is leaking between two teeth. The taste is awful, but that doesn't stop my tongue from going to it all the time. Like salt water and pennies. And, it's my upper two right teeth. I know it isn't from meds because I've had it for many months and I just started on pills this week. I didn't have any teeth pulled, but I did wake up about 8 months ago having gritted my teeth so much that TMJ symptoms started and my teeth wouldn't mesh anymore. Jamie, I'm so glad to know I'm not crazy. Thank you for your post.
My TN started one week ago. The metallic taste occurs on the same side as the spasms. I'm glad to hear that I am not crazy. It started before I was on the medication, so I think it is just a result of the neuralgia.
You are not crazy. It is very comforting to find out that all of these strange symptoms you have are shared by others. Mine started before medication to and actually went away once my medication started working. Ask anything here, we are all here to help one another.