Finally diagnosed but now need neurologist ... also, yikes, dental cleaning?

I went to a wonderful FPA recommended neurosurgeon. I didn’t know he didn’t do anything BUT surgery. At least I officially have TN now. I may do gamma knife at some point, but I’m managing on carbamazepine 400mg twice a day. The pain is there, but I can deal with it and eat.

I’m in RI but can travel a little, and happy to do remote visits or phone visits. I have my imaging and labs and all… there is not much to see (in fact, the neurosurgeon never touched me, although the NP did a general neurological exam). I can’t find any recommendation… the other FPA recommended doctor in MA doesn’t have great reviews and a lot of them are surgeons.

Also, I’m afraid to have dental cleaning. I feel like it’s going to set me off horribly. A few of my teeth are tender. What do people do?

Here is what I did and it worked about 90%. My dentist found an assessed tooth after checking several times. He did a root canal and after three months he sent me to another dentist to go much deeper on the root canal. This has worked pretty good except every once in a while I do have some pain at the tooth location. The tooth is now absolutely dead but the trigmeminal nerve isn’t so there is a little pain that will not go away.
I take 1200-1800 mg gabapentin a day (morning, noon, night) and that keeps the TN in check. Gabapentin is pretty cheap if you use your insurance or GoodRX, 450 pills @+/- % $50.00. Gabapentin is good for foot neuropathy as well.
I hope my story will help you as TN is no fun. In all the Doctors I have seen there has only been one that has spot the truth. The nerve is damaged and there is nothing that can be done to repair it. So meds are the only way to control the pain.
Lots of luck to you and it is necessary to keep the spirits up. Might look into DLPA to keep the endorphins at a good level. Its has helped me on a number of occasions.

A word on dental cleanings, I found the new dental cleaning that uses water about put me through the roof in terms of flaring up my TN2, I’ve found the old stand by manual cleaning to be best. I also always make waaay too much of the TN2 issue and am overly dramatic about it so the dentist is super careful with me.

1 Like

Thanks. I have assurances that nothing is wrong with my teeth, from my dentist, neurologist, neurosurgeon, and PCP.

Gabapentin hasn’t helped, but they have only prescribed up to 300mg a day along with the carbamazepine.

I will check into that supplement! I was experimentally on LDN for a year but I didn’t have this issue then. Ugh!

Yikes, that’s what I was worried about. If they hit those tender spots… I don’t need to be super dramatic! If they set me off, I’m in agony for at least an hour, so it’s a huge deal… thanks!

Dear recipe for disaster, your situation sounds like something I have said before. A surgeon is just that , a surgeon. I went to the surgeon after suggestions from my neurologist. And my last resort. As my situation may be different ( a brain tumor on my trigeminal nerve), when it got so bad i got some relief from surgeon with a rhizotomy.
I too am suspect of dentist as much as i need my teeth cleaned. And I’m on tegretol twice a day. Afraid if I don’t take it , I’ll have electric shocks again.
We all seem to have different reasons for the TMJ problem.
I’m afraid I may not be of any help but I know you need a good neurologist before the neuro surgeon. Good luck. Gloria37

Hi fellow sufferer,
I just had a crown done on the side of my face (right) that I suffer with. I have found that Advil before the procedure and afterwards for a day or two, helps quiet the nerve.

Bummer, I’m allergic to NSAIDs. I wonder if there is something they can do to trigger me less. Brushing my teeth was plenty to set me off before I got on this dose of carbamazepine.

Unfortunately, the only person I could find anywhere close (particularly recommended by anyone, especially FPA) was a neurosurgeon. I’m still seeking a neurologist. I had to go to someone vs. no one! The surgeon was not pushy at all… I got my diagnosis, at least, and he was really nice. Now I know my options for the future if needed. I have a referral pending for a neurology office in my state. Hopefully one of those doctors is good with TN.

I get my teeth cleaned twice a year. Brushing them was plenty to set me off before I had my meds increased enough. I am really worried about this.

I think I’m pretty dependent on carbamazepine twice a day too. I have constant gnawing pain when the dose isn’t high enough.

Once a year I have sedation dental appointment- the dentist sedates me with an iv and does all he can do while I’m under. My teeth and jaw are extremely sensitive all the time and sedation is the only option. I plan it accordingly, as I always flare afterwards.

Yikes, that’s what I was afraid of. I don’t really have a way to treat flares afterwards… maybe go up a little on the carbamazepine a week before(I’m at 900mg a day and can go up to 1200mg max)?? Then I’m scared I won’t be able to reduce it again. It’s more the flare than the pain during the cleaning I’m scared of. I don’t think my dentist sedates or anything. I have super sensitivity in 3 teeth and my gums.

I had to find a sedation dentist and teach him about TN - worth it though! He is fantastic and understands how to treat me now.