Does anyone else have the side of their tongue go into overdrive and make food taste horribly bitter? I think it must be the lingual branch of the nerve, I have trigger points on my top and bottom gum and they often start tingling then my tastebuds go extra sensitive on the bitter perception part of my tongue (on the side down the edge) and take over any nice taste from other parts of my tongue. It's awful as it makes anything taste bitter (bad enough the tingling drives me nuts). Even my saliva in my mouth has a bitter edge to it :(
Anyone have the same thing? Or am I just weird? :)
Ugh that would suck!
My grandpa was on some medicine (for something else, I can't remember what, but he doesn't have TN or anything like that), and it made pretty much everything he ate taste bitter. He lost a LOT of weight. After a few months, they finally got him on some other meds and the taste problem wasn't as bad.
I'm trying to remember what tasted good to him. I think it was ice cream. I'll ask my grandparents, I know there were only a few things he'd eat because of the taste.
I'd definitely let your doctor know :)
Take care!
Due to see a (in my opinion a bit useless, we will see) neurologist in a few weeks. Some sleeping pills can make everything bitter (I once took some zopiclone and that happened), now I'll have to look up what I am on just in case it is the meds!
I get this in a mild form, also my tongue is often too big for my mouth, then edges swell!
Please let me know how your visit to the Neurologist went. Some have only heard of it, but never had a patient with it. It might be a good idea to find a neurologist who has some experience with TN. However, it is different for every patient, tho we are all having facial pain. Please check out my new group called Topical Cream for TN patients.
I don't know how many neurologists and neurosurgeons I've seen since I got this disease in 2000 (dental procedure).
I'm so sorry about your tongue. That seems like it would be a horrible problem. With my arms around you, praying for you.
Your friend,
Julz aka uwfotogal
Not sure if this is related, but I'm reading the book Striking back and noticed another facial pain disorder called Raeder's paratrigeminal syndrome (aka Raeder's syndrome or paratrigeminal neuralgia) where "some people also report an unpleasant taste in the mouth".
You might want to see if any of the other symptoms match yours... The main symptoms listed in the book are deep boring, throbbing or stabbing pain in the eye/forehead on one side of the face, constant pain, dropping eyelid, constricted pupil. It's on pg 95 in the chapter "Other Face Pains".
I didn't found out yet about the medications and foods that tasted good for my grandpa. I haven't told my grandparents about my face pain (TN?) yet because my grandpa's having so many of his own health issues. He's actually getting surgery today to see if his tumor is cancerous. But, when things settle down, I'll ask :)
I hope you can find some answers and some relief! :)