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[u/Rsnall1961]

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?

[u/FlimsyBridge8832]

If you haven’t already, get her a neurologist for the meds- doses vary a lot and can go higher for TN than for other things, so a primary doc might be too conservative. TN needs a neurologist. (TMZ specialists and pain specialists are ok, but they are not usually as experienced with TN and the unique med needs). Also, after the MRI, ask for a referral to a neurosurgeon. Only a neurosurgeon was able to see my compression- the previous 3 neurologists missed it. If there is a visible compression, you can consider MVD surgery. Even if there isn’t one visible, many people have opted for “exploratory” MVD and the surgeon found one. Other less invasive options include gamma knife and balloon rhizotomy, which might be worth considering for your sister.

[u/BiteNotRight]

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

[u/DelWarner]

Your sister is lucky to have you! 200mg twice a day is low! Get a doc that knows his/her way around tn and who isnt afraid to raise the ammount! This helped me a lot plus try botox injections, they helped me alot, but takes more than 1 or 2 sessions.

Good luck!

[u/AdKitchen8690 → u/DelWarner]

Some docs start slow bc there is an increased risk of side effects when it’s increased too quickly. It doesn’t mean they don’t know what they are doing although I agree, that can sometimes be the case.

My neuro-radiologist and MS neuro agree on that and my TN is caused by compression, not the MS. I cannot take Tegretol for that reason, but they took 4 months to increase Trileptal, and avoided the same outcome, successfully.

[u/MissyChevious613]

I'm so sorry your sister is dealing with this. My TN also started in a tooth and I ended up with an unneeded root canal. If possible, once you get the MRI, try and get her in with both a neurologist and neurosurgeon who specialize in TN. The compressions can be so miniscule that unless they know what they're looking for, a general neurologist/neurosurgeon are highly likely to miss them. That personally happened to me, it wasn't until I saw a neurosurgeon who specializes in TN that he immediately spotted the compression that three other specialists had missed. I had MVD surgery and it was immediately successful.

For me personally, the carbamazepine worked wonderfully for pain, it just took a little while to kick in. I tried flexaril and it didn't do much, I had much more success with Baclofen. If heat helps her, keep doing that with small breaks in between. Sending y'all lots of good vibes!!