Anyone else with Altered Taste All Day Long?

@krishna079 I don't really know where to go anymore with this. It was all after a root canal also. I have spent so much money trying to figure out the cause with no avail....I have researched so much and I truly believe it was nerve damage from that dental visit. No Blame, just trying to live a pain free life.

Good evening! I know this thread is a couple months old but I am in the same boat and it's awful!!

People don't appreciate how horrible it is.

Mine started last year it was always salty..like I had salt crystals in my saliva. Docs found nothing and I was convinced it was my HRT so came off the HRT and had a few months relief but now the taste has come back and less salty more bitter but just as horrible and all consuming. And again like you only goes away when I eat. I've tried lots of different toothpastes too but nothing is helping.

Have any of you made any breakthroughs? Xx

@woozielicious I have been away for a few days and will be returning on Wednesday so I promise to answer you then. I have seen numerous doctors and I’ve gotten different advice about the different things to try so I will fill you in later in the week. I have not found anyone that has the exact problem that we are having so I’m anxious to discuss it with you!!

@woozielicious , I can’t recall my last post about the taste issue. Mine started in the fall of 2023. I can’t be certain of the cause, but I also had a loss of smell for over 6 months. ENT diagnosed cause as post covid syndrome. Still, I had other things going on too such as B12 deficiency, taking medication (antibiotic), skin tingling, hair loss, etc. Neurologists not sure. Anyway, mine started out very metallic, then became bitter, then turned salty. The intensity has decreased and is at a more tolerable level right now, though….it’s still continuous.

For me, I did not find things like mouth rinses or moisturizers helpful, since I believe and doctors seem to support that the taste is not really something in my mouth….it’s a faulty signal telling me I taste it. I think @neisie13 had posted something about phantom smells. I’ve had them too, but they left after a few months. My phantom smells were intermittent and eventually subsided. My brain MRI was normal. So…..that summarizes my journey. It’s a difficult thing to live with. You’re right…people don’t really get it unless they have experienced it before.

I have the no taste problem also. I can barely taste some things but very few. It's frustrating. I have 4 more radiation treatments then I'm hoping that I can start getting my taste back and my throat starts to heal...

@tkdino123 , do you mind saying the type of radiation? And have doctors said the taste is temporary? I’m eager for any info.

@woozielicious Sorry to hear that you are having the same issue and yes, it is awful!! My taste issues also started around the end of 2024 for no reason. I never had Covid or even a cold during the two or three years before it started. First I had a sour/bitter taste and then it started rotating with a horrible salty taste like you describe. I have tried changing my diet on my own and have followed the advice of my dentist and ENT and even gastroenterologist, but nothing they suggested helped. I used all kinds of rinses, gels and saliva enhancers and even two different medications that increase saliva but none did anything and neither did a reflux medication. The rinses ended up leaving a horrible sour taste after an hour, worse than what it normally is and having a little more saliva did nothing either. I also tried different toothpastes.
I was put on Gabapentin in case it was neurological and that didn't help so now I am on duloxetine (Cymbalta) since it is often used to pain and neurological issues. It may be helping the salty taste a bit but not the sour taste. I just had tons of bloodwork and my vitamin levels are normal and so were my levels of heavy metals. I did test highly positive for Sjogren's Disease but the rheumatologist isn't sure that it's related since most of the time the taste issues are metallic or while eating. Like you I am pretty ok when I eat except for very salty things which I taste strongly. I am having a few more neurologic tests in the next two months so I'll let you know if anything shows up but I doubt it. Right...no one can even imagine what we are going through. @celia16 and I have been in touch many times about this frustrating condition!!!

@neisie13 , that’s right. This condition is something you never think you’ll get. Never crossed my mind of getting a taste disorder! Incredibly unique, but not in a good way.