Anyone else with Altered Taste All Day Long?

@jasmine98 The only doctor who seems to care is my rheumatologist. He is the one who tried gabapentin and then duloxetine. He feels it is a neurological issue since none of the usual treatments for sjogren's dry mouth didn't help. It will be interesting to see if the Gabapentin helps.

I have had altered taste, at times, for years! In fact, I personally think that my taste being affected, where some foods just seemed to have a bland taste, whereas, most of my life, most always foods tasted good time after time, changed dramatically for me, about 12 years ago, when I was 68. Sure, I thought getting older can maybe affect taste! However, within a year of my having taste problems, I had freezing in place episodes, and falling down, where I sustained a concussion and 2 black eyes, with a severe headache! Even with imaging, and nerve conduction tests, at the small town, local hospital, it did not reveal to the local Family Doctor, what was wrong with me! So, the tests were deemed inconclusive! After another few episodes of my freezing in place, and falling, within the next month, my daughter, who has a nursing degree, decided to take me to the big city regional hospital, where a neurologist examined me, and declared that I probably had Parkinson’s Disease! With carb/levodopa tablets my symptoms improved, and other further testing, so it was confirmed that I have Parkinson’s Disease! Taste and smelling problems, were, for me, some first symptoms, of my having Parkinson’s Disease! My daughter moved us to the city where the regional medical center is located, about 10 years ago, and I’ve been seeing a neurologist ever since! Recently, I had an MRI, where the substantia nigra region of my brain ‘lit up’. In normal people the substantia nigra is dark! Parkinson’s Disease makes it ‘light’, where there is a loss of dopamine - is what my daughter explained to me! So, in my particular case, that explains why my taste is off! I do not have a salty, or sour taste problem, rather it’s like the food tastes bland, with not much flavor! My Grandma, as she got older, had that bland taste problem, too. Age can be a factor, or so I have been told by some medical professionals! The good news, though, is that I do not consistently have a taste problem! There are still many times when food still tastes real good to me, especially sweet food! Good luck as you discover what may be affecting your taste!

@celia16 I did try everything the doctors prescribed, unfortunately, they didn’t help. I’m so glad that yours is getting better, it gives us hope! Thank you for sharing the video!

@neisie13 I think they just don’t understand what’s going and the easiest thing to say is acid reflux so they prescribe PPI. I’ll keep you updated. Wish me luck! 🤞

The PPI didn't help me either. They pretty much feel that my issue is due to an autoimmune disease but none of the treatments they have tried have not helped at all except for the duloxetine. I am also taking a probiotic lozenger before bed and don't drink anything for several hours. Between the two things I am getting some relief but I still have to watch everything I eat (no spicy food) and spend the day continuing reducing the bitter/sour/salty taste that appears off and on throughout the day. Yes, I definitely wish you good luck!!

@neisie13 , on the issue of autoimmune. Well, I have been evaluated for that as well. I do have type I diabetes, psoriasis and hypothyroidism, which are autoimmune disorders. But I haven’t been diagnosed with other autoimmune such as Lupus, Sjogrens, etc. I did have a positive ANA test. Anyway, it’s suspected for years by multiple doctors due to my symptoms. Months ago my dermatologist prescribed the med Hydroxychloroquine for my hair loss. It came suddenly after covid. I’m not sure if it’s helping that, but it caused an almost miraculous improvement in my muscle, joint, tissue pain and soreness. Those issues disappeared soon after I started that med. I have no other explanation for it.

I will say that my improvement in the taste issue had already substantially improved BEFORE I started that med. it’s gotten much better since then though. So, I can’t say that med is actually helping with taste. I will suggest you discuss trying it, if you have any inkling it’s related to autoimmune. All my doctors have been supportive of this med AND my rheumatologist just ordered more labs and increased the dosage. When you suffer with this taste, all options should be explored, imo. Others do not comprehend the magnitude of it’s intrusion into your life. It’s constant distress, imo.

@celia16 You certainly have your share of illnesses. I was on hydroxychloroquine many years ago and it made the ringing in my ears (tinnitus) unbearable. I have had tinnitus for many years and I didn't realize that hydroxychloroquine was one medication to avoid if you have tinnitus. Anyway, unfortunately I can't take it. I'm so glad it works for you. I'm just glad that I found a medication that makes the taste issue bearable and even eliminates it for hours at a time unless I eat something that aggravates my taste buds or if I get really stressed. It's great that we care enough about each other that we share what works and what doesn't!!!

@foundryrat743 I'm so sorry to read about your journey to find a diagnosis and that it is Parkinson's. Thank goodness your daughter took you to a much better hospital. I don't have a bland taste and the one thing that has not been a problem is when I eat I taste food normally except for something with salt. I used to put salt on what I was eating before tasting it, that's how much salt I needed but now if there is any significant amount of salt in a food like soup, crackers, deli meat, etc. I know to stay away from it because it tastes 10 times saltier to me than to the others eating it. Yes, you do lose taste as you age that's why a lot of super seniors don't eat that much but luckily so far I can taste food fairly normally. Thank you for your post and good luck to you.