Hi everyone, this question is actually for my friend's sister. She's been having excruciating pain in both ears and has had every test under the sun and they have no answers for her other than it sounds like it's a nerve issue. She's on Gabapentin and feels much better, thankfully.
The way she describes her pain is that it's like someone is sticking a branding iron/dagger through one ear and it's coming out of the other ear. She doesn't have any actual face pain, though....just the ear pain.
Does this sound like Trigeminal Neuralgia?
Thanks for starting another encouraging group, Jackie. Big hugs!
Big hugs back Vicki, thank you for joining.
I am unsure if this is TN/ATN or not but it does sound pretty awful. If she is responding to Gabapentin then it suggests that some nerve issue is going on.
Wish I know more to help you both out"
Yes, this is Geniculate nerve pain if the gabapentin worked. Ask her if she has been tested for hypothyroid. Mom and Grandma also had TN, and for both of them it came when their thyroid went into failure, and just 3 months ago I found out my thyroid went into failure many years ago, so the book I have on hypothyroid that says it can cause nerve pain, is probably right! There is a connection. Sublingual (under tongue) vitamin B drops and lozenges help heal nerves that have damage. I suggest everyone with nerve pain gets on that.
Lastly - make sure she is taking her Gabapentin at the same time every day! This is a huge difference. This is what I take currently. In 1999 I was diagnosed as hyperthyroid, my doctor gave me two huge radioactive pills to take to remove. In 2001, my pain in my ear began and my visits to the ENT were unending. my doctor referred me to a neuro consult and I ended up not going due to a work related trip; I finally made it to see the neuro (last year) and finally on meds....warm compress helps; one tylenol / one ibuprofin at the same time...
I have had ear pain (sometimes one ear, sometimes the other sometime both) for 5 months. Searing, buring, tearing too. Some doctors day TN2 some say it can't be cause its on both sides and tongue. Tried Gabapentin didn't work. I am miserable. Now trying Nortriptaline. So far nothing. I am very frustrated
How long has she been having the ear pain? it was about a week after my ear pain started (just on the one side) before all the face pain kicked in. It was little niggles to start and then built up to full blown pain. The face pain didnt really bother me at first(dont think I noticed it much) as the ear pain was so intense. x
Oh, that sounds miserable, Wxeye. I hope you're feeling better by now.
Wxeye said:
I have had ear pain (sometimes one ear, sometimes the other sometime both) for 5 months. Searing, buring, tearing too. Some doctors day TN2 some say it can't be cause its on both sides and tongue. Tried Gabapentin didn't work. I am miserable. Now trying Nortriptaline. So far nothing. I am very frustrated
I think her ear pain is continually there but being managed by Neurontin. If she stops the medicine her ear pain comes back. I don't think she's experienced the facial pain yet but I know each of our cases are different.
Thanks for sharing, Inis. :)
Inis said:
How long has she been having the ear pain? it was about a week after my ear pain started (just on the one side) before all the face pain kicked in. It was little niggles to start and then built up to full blown pain. The face pain didnt really bother me at first(dont think I noticed it much) as the ear pain was so intense. x
There is an actual ear neuralgia called geniculate nueralgia. They can treat it like tn but it is an actual nerve disorder. The difference between the two is tn involves nerve 5 in the brain stem and geniculate involves nerve 7. GN is a ear nerve disorder and TN is a facial disorder…hope this helps