I have TN1 in my 3rd Trigeminal nerve… I sadly came out of remission a few months ago and got put back on the medication roller coaster. I have been taking Neurontin for about 5 days now and it seems to be helping. However, I recently remembered I have a cracked/ broken tooth on the bottom right of my mouth (same side as my TN) and I don’t have any pain in the tooth but was told a while ago I would need a root canal but I could not afford it (was in remission at this time). So naturally, I freaked out and called the only dentist that I can be seen by … it’s a community dental clinic for people with no income … I’m on my dads insurance because I’m only
23 but the only place I can go is here. I am going in 2 days for x-rays to see if I have an infection sitting in the root that might be why my TN flared … but I’m afraid the dentist I see will have no idea what TN is and it will cause more pain. I am terrified … has anyone had to go to the dentist with active TN? What happened? Did it do more harm than good? I’m so scared.
Hi
Can you phone up their office and tell them what you have so that the dentist can read up on it?
Or bring the book Striking Back
And try and bring someone with you who knows what is going on.
Bring all your med info and also who the dentist is that said you needed a root canal.
or just print out some of the info that is here.
Wow
I hope you have family to bring with you.
hugs
so young
I hope getting the tooth fixed helps the pain and you go into remission again.
Thank you so much Ellen-
All I have is my fiance to come with me. I feel like this dentist won’t know anything about my TN or what it is. I was told to bring a paper stating I had TN to the appointment but other than that I don’t think she had any idea what I was saying when I was describing to her that they had to be very gentle. I am absolutely terrified but I need to know if I have infection and if I have to have a root canal I’ll probably have a break down as I have read horror stories about people with active TN going in for root canal and it causing them a world of pain. I can’t take anymore pain … I am so distraught. I can’t afford the book, but I want it so badly. Thank you for your reply. I appreciate it.
Hi Cheyane93,
When I have to have dentist work, I use the gas to help. It relaxes me and when the zaps come during the procedure the pain is damped down to almost nothing. I also asked for a dentist that was aware of TN and found one but it took awhile to do so. Good luck and I hope all goes well.
Scott
Thanks Scott-
How did you go about finding one ? What did you say to them?
I just kept calling dental offices until I found one that new about it. I
talked to the dentist on the phone and was satisfied with his answers. I
found him at a dental place that was part of the hospital in the town that
my daughter lives in.
Hi Cheyane
You bring your fiance.Ask if he can come in the room with you.
And break down if you need to .I think we all have.
Please print out some info that you can get on line about tn.
I now give a new doctor something in writing for them to read before they even touch me.
Maybe for this appointment you just want them to look.
Get a feel for the dentist.I always get knocked out during procedures-but the gas is probably a good idea.
Let us know.
I really hope once that tooth is treated you are good for a long,long time.
Print out information from the internet from WebMD or another acceptable source. Bring it with you. Also speak to the dr who prescribes the tri medication and see if the dr will speak to the dentist. I had the same problem. The dentist did not know what Trigeminal was. He had to look it up on the internet. He then made notes in my chart. Hopefully your dentist will listen. If the dentist does not listen, you may have to leave because the dentist may perform unnecessary procedures.
I went to the dentist today for a check up and cleaning. It is always a stressful event. I had gas for the cleaning but not for the check up. All went ok even though the checkup had some painful shocks. The cleaning had shocks also but didnt have bad pain since the gas dull it. I have had in the past some extractions on my TN side due to breaking off a couple of crowns because of clinching of the jaw from pain. I didnt have any more pain than normal so i feel they were successful. I did use the gas for that also
And how did the appointment go, Cheyane93?
Seenie
Hello thanks for asking …it went ok. They did a panoramic X-ray and said there was a build up of infection. They gave me antibiotics and told me to see an endodontist or oral surgeon. I didn’t have much pain after the appointment but now I’m having a lot of breakthrough pain and I’m so scared the gabapentin and baclofen are losing effectiveness. I don’t know what to do …
I am so sorry! I just went through hell from getting a new dental crown (finally getting it under control with a combo of Keppra and neurontin) so i would urge caution with dental stuff. Obviously if you have an infection you need to treat that though and maybe it will help once things calm down. Just make sure any dentist you see knows you have this disorder and ask them to treat you very carefully. I am probably going to switch to a new dentist because I want to find someone who really understands this disorder and how to handle patients like us. I want to avoid future triggers because it is so debilitating when it gets bad and as a busy mom I just don’t have time for this shit! I hope you get your dental stuff figured out and also get some relief from pain. Take good care.
And I wouldn’t hesitate to play with your dosages if you are having a flare up. (Ask your doctor, of course). My neurologist has given me upper boundaries but within that has given me freedom to fiddle around with my dosages as needed. I can tell when I need more meds (face starts to hurt when I am more likely to have shocks) and I adjust accordingly. I was finding a more frequent dosing schedule was necessary to get this current bout under control. It has made all the difference and I am now backing off to one dose a day so I am a little more “present”. Also CBD tinctures (low THC) have helped a lot with general pain in my teeth. Not sure if you have access to that where you live but it definitely helps when it’s bad. Worth a try. I was desperate and willing to try anything and that seemed to help. hang in there!