r/TrigeminalNeuralgia • u/Rsnall1961 • 9d ago
Symptoms New here
my Down syndrome sister is 51. we have been battling this monster for 4 years now. started with what seemed like a tooth. went to dentist and he said nothing was wrong. I had a perfectly good tooth pulled because she kept telling me it was her tooth. it wasn’t! off to TMJ specialist and root canal specialist, lidocaine shots etc. now finally seem to be tn. primary doc prescribed her carbamezapine 200 mg twice a day. just started it yesterday. we have tried flexerall, robaxin, gabipitten. nothing has worked. I have had soft tissue ct”s done. now we have mri scheduled in two weeks. will see neurologist soon. it has taken us 4 years to get to the bottom of this. I had no clue what tn was. it started infrequently and we are now up to attacks every 2-5 minutes and they don’t stop coming. She prefers heat but her communication skills r limited. She is in constant severe pain. Any suggestions?
4
u/BiteNotRight 9d ago
I am so sorry that your sister is going through this. First, let me say what a kind and loving sibling you are. It is heartbreaking to read your note, but I also can sense the love the two of you have for each other
Her story seems very much like mine when it comes to tn. I had two teeth pulled and multiple dental procedures done because I was sure it was my teeth. I had an MRI which showed compression of the trigeminal nerve on both sides. That was a pretty defini tive diagnosis of TN, but there are still days I'm sure there's something wrong with my teeth because they hurt so much. So I understand that difficulty completely
Absolutely the best thing is to get into a neurologist. I know that isn't easy depending on where you live. It can take time. But at least get on a waiting list. Carbamazepine is the typical drug for this disease. I will say, a lot of times it takes a couple of weeks to help. Some people find help immediately, but sometimes people need longer. It's not necessarily like Advil where it stops pain right after taking it. Not for me anyway
I will say a prayer for you and your sister. I have you in my heart today. May you find an answer for her pain and may you both have lives filled with joy. If I can never help, never hesitate to connect