Anyone else with Altered Taste All Day Long?

@jasmine98 I am glad that you are trying some medications to see if they help. Gabapentin did not help me but everyone is different. I may have mentioned that I am now on Duloxetine (Cymbalta). It has definitely made a difference. I am not saying that it has cured me but I do have days during the week where I do not even think about my mouth and suddenly I realize that I have gone a few hours with no salty or bitter taste. I am still sensitive to certain foods and if I use Biotene rinse I taste it for hours so my taste buds are still very sensitive. Very few people realize how debilitating this issue is. The other thing I take is a probiotic lozenger for oral health. It was recommended by someone on this group and also by a dry mouth specialist. I use it right before bed. Let us know if you get any relief from the gabapentin... Good luck.

No, it literally started out of nowhere I wasn’t using any kind of medication or anything I was sitting and I just found my mouth so bitter from one side and it spread all over my mouth. No one knows what’s happening and it’s so depressing really.

@neisie13 I hope it gets better even more for you! truly it’s one of the worst thing to ever happen to me and no one understand how tiring and depressing it gets. I tried cymbalta in the past and I had a bad reaction so I’m on Gabapentin hoping it helps. How long did you stay on Gabapentin? I will keep you updated.

@jasmine98 I totally sympathize with you. Two of the doctors that I saw just said that I was not drinking enough water and I knew that was not the answer. I tried anyway and it didn't do anything. The dentist said that water evaporates after a minute so instead to try the rinses and sprays for dry mouth. They only helped for a half hour or so and then the bad taste came back even worse. I guess at least the gum helps for quite a while. I have been on Gabapentin several times for different reasons. After surgery they prescribed it for pain, then years later for possible neuropathy in my legs (didn't help) and then a few months ago for the taste disorder. I stayed on it for several months, 100 mg twice during the day and then 300 mg at night and it didn't help me at all. Yes, it is an extremely exhausting disorder. Even with the Cymbalta I have bad days and I go from gum to biotene rinse, to brushing my teeth all day to get some relief. Are you able to eat normally and taste your food?

@jasmine98 , I can relate. While I suspect mine came on due to either the anti fungal med or a combination of that with an antibiotic I took the same day, I can’t be certain.

There are other theories.

I have tried to look at the phenomenon logically. I have never seen any evidence that the constant bad taste was due to dryness or any kind of indigestion in me. It’s something that is on the inside of the body that causes it, imo and so rinses, lozenges, etc. just mask it.

Also, I’m not sure what Gabapentin is supposed to do. I know many people who take it for neuropathy pain and burning. If it helps, then I say great. I tried it and it had no impact on my metallic taste. It made me feel very nice though. Some believe taste disorder is related to anxiety/depression.

There is also a theory that the constant metallic or bitter taste is a FORM of burning mouth syndrome. I have no idea if that’s true but accept it as a reasonable explanation. I suspect that the doctors don’t concern themselves with figuring out the cause, since they don’t know of any treatment. They can’t fix it, so why spend time searching for the cause? That’s my take on it.

This link has a lot of info. So even though it’s called Burning Mouth, it’s an umbrella term for taste disorders.

Additionally: I have had several phantom smells that appeared intermittently for the last 20 years. The last one also happened about the same time my metallic taste started. I lost almost all smell, except for the phantom smell of a floral sweet odor. It lasted about 6 months and left. It just adds to the mystery.
https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/syc-20350911

@celia16 That article on burning mouth syndrome was really enlightening!!! I had heard of it many times before but I thought that since I didn't have that burning sensation it didn't apply to me but the article lists many other symptoms that I have. I agree that I don't think the dry mouth is the cause. I have tried every remedy to relieve dry mouth and not one of them has worked. The doctor feels that it's neurological so that why he started me on gabapentin which didn't work. The Cybalta I am taking is for depression/anxiety and nerve pain so maybe one or more of those things is the cause since it is helping. I also take a probiotic lozenger at night which was recommended by someone on this board and also by a Sjorgen's specialist. Yes, the gum, rinses, etc. just mask the symtoms but are definitely not the cure. Those phantom smells you had were bizaare. It's amazing what crazy things we have to deal with!!

@neisie13 , I have no idea what caused mine, but I’ve had 4 different phantom smells over the years. None since mid 2024. Thank goodness. My mom has it too. My brain MRI was normal. So, idk.