I’ve recently been diagnosed w bilateral TN…I was diagnosed about 2 years ago w right sided TN and about a month ago I kept having recurrent what I thought were just ear infections w severe pain. I wound up at the ER about five times each time just being told you have fluid behind your ear or your ear is red and inflamed, until this past Sunday when the Er doc said seriously…your ear is absolutely fine…think about the pain you’ve had in the last w flares on the other side of your face…I’m sorry to say it but I strongly believe you are now suffering w bilateral TN…does anyone else on here suffer w bilateral TN? If it’s truly what I have I’m finding that my triggers are different on either side…my right is mainly high pitched or loud sounds or heat and the left is breezes or if something touches my skin it triggers an attack. My right side seemed to be under control by meds for the most part. Knock on wood I hadn’t had an attack since last January. But now I’m afraid they will be switching my med regiment to try to control the left side as well. I’m only 28 years old w 2 young girls and have recently become a unit supervisor at a dementia unit. I’m a mess trying to figure all of this out and would appreciate any input from you all…thanks in advance…
I’m sorry you are going through this. You may not need a med change but an increase or may just a med added. Do you have someone who is managing your TN you can see?
Hi Meghan, I can certainly relate .
I was 29 when I was first diagnosed with bilateral TN…I also had two young girls.
I’m now 41 and my right side is controlled by meds it is my left side that has given me the most trouble…
I never feel the pain on both sides at the same time…it’s either left or right.
Each side is different, with different triggers too.
Right side is TN1, left side is TN2 with some TN1.
My advice to you would be to ask your doctor for a slight increase with your current med. that could do the trick…
I hope your pain lessens with minimal med increase.
(( hugs )) Mimi
The pain hasnt ever happened on both sides at once(thank goodness. …I think I’d completely lose it if that happened) I wasnt sure if the different triggers made sense but as I read now its not uncommon…I will definitely get in asap w neuro to discuss the meds…Im already taking trileptal 1200 mg twice a day which I was told is max daily dosage but the ladt neurologist said he would consider increasing it it still. …thank you for making me realize im not as crazy as I first thought…but now I know I’m not alone and this all is doable. .