Hello all, I am new to this site and also glad to have found this forum or actual place were people share the same topic on TN and how we can cope with this problem and how we can share our story’s, bc I think its great when we can talk about it and brings others hope when were in pain. This journey started at the dentist office, after a deep cleaning, and after going back to the dentist office for over at least 6 times. The dentist kept telling me that there was nothing wrong with my tooth and gums and that all was well and that they couldn’t find any cracks where I kept pointing out were the pain was coming from. The dentist then sent me to another dental specialist who did numerous scans on my teeth and could not find anything wrong but I pushed the issue and had them extract the tooth that the pain was coming from. And that’s when my world got flipped upside down, and that was a little over 5 years ago. I have been living with severe pain on a daily basis from my gum area where my tooth was on the upper left side of my mouth. I have tried medications from my neurologist but had to stop due to side effects. So I live on Tylenol, Ibuprofen and hydrocodone which is monitored by my pcp bc they don’t want you taking more than you need to. But of course they don’t understand the pain that you are living with. So far I have had the Gamma knife procedure and no avail the pain came back the same day. I am pending my MVD surgery, but bc of covid 19 it was put on hold bc of the hospital’s here are only taking covid 19 patients as priority first. I have tried orajel to rub on my gums and essential oils to rub behind my ear other than that I heard acupuncture is a good idea and am looking into that. My neurologist has little hope bc it seems like he ran out of ideas for me. So I’m leaning towards the surgeon at this point. Other than that I have my family but at times it seems that they look weary when I have to go to the Emergency room again.
Hi Coco,
My heart goes out to you. I too had my world changed by a trip to the dentist when I had 4 fillings done at once. Then the pain started, then root canals, three extracted teeth. I had atypical TN which caused constant burning crushing pain in teeth. At times I wanted all my teeth pulled but neurologist said it would make worse, it’s gotten slowly better but every 4-5 weeks I get relapse for 10 days or so though not as bad.
Welcome and we are here for you.
Hi Coco, I know where you are, you just described my TN. Mine was a root canal, over 15 years ago. I’ve had gamma knife x 2, and MVD, gamma knife worked for awhile but the surgery did nothing. The drugs help keep most of the pain away. If you can just hang in there with the drugs I promise you the side effects will be less. In the beginning most days I felt like I was in lala land. I’ve had to increase my drugs over the years but I’m use to it and have advantages bc I don’t work…some days I’m thankful that I don’t work. Smiling and talking are hard some days. I hope And pray your surgery is successful. I take carbamazepine and Zoloft together and it seems the two work for me. I wish you to be pain free soon.
Hi Coco,
I am sorry to hear you have been dealing with this for 5 years. My issues have been 4 years & I say wow 4 years of this. I am still trying to get answers with areas of pain. One thing for sure is if you ever get an issue with sinus/teeth- it’s a huge huge huge pain in the rear because they blame eachother. Lots of dr appts and well I just had sinus surgery on my maxillary sinus & it’s only been 5 weeks but I just don’t know. I also have an issue with my lower left jaw. Nothing is showing up on xrays & its. Capped tooth so the cold test doesn’t work well to see if it’s alive. I had a cracked tooth pulled hoping it would solve that area but nope. So I am questioning the molar behind it but nothing is showing up on X-ray. Bottom line it stinks! I have been taking ibproferin and was on some pain meds but i was on a low dose and needed more but stopped bc of the side effects too. Ugh weight gain, sleepiness, hunger (not sure if hunger is one but I put on weight & ate a Lot). It’s always good to vent!!!
Thank you Empathmatters for your in put, in sure feels great knowing that you have other folks who have gone through what your experiencing or are still going through.
Hi dfw56, I also would like to thank you for your kind gestures its good to know that you have others sharing your symptoms and experiences with you. And there is a place that we can read and learn about what we can share with our doctor’s too.
Hi Lala1234, Isn’t amazing how all of stories just link together? I’m amazed what I have read so far and I’m like yes this all sounds so familiar to what I’m going through… I have never met anyone with TN in my life and I come this website and see all these names and people just suffering with the same issues that I’m going through it just seems so real.
Coco, sorry to hear of your suffering. I’ve been there so i do feel your pain. My experience may help and maybe not. But my problems started with thinking i was dealing with denial problem. I found out mine was from a brain tumor On my brain stem resting on my trigeminal nerve. To make it short, I tried radiation, it brought some relief but short lived. I had a rhizotomy four years ago. Some problems are there but only a a few compared to the agonizing excruciating pain i dealt with. I’m on the east coast and went to a doctor that specializes in rhizotimies at John Hopkins. I don’t know your circumstances but I’m praying you can find relief. Gloria37
Hi Gloria, I also had an Mri which didn’t show anything not even a blockage or TN that’s why I was even hesitant to think I even had it, but the symptoms all point to TN and I’m just praying that the surgery will give me relief, so its just I’m waiting for covid to get cleared here so I can have the surgery.
Hi,
I’m the opposite of a newbie. I was diagnosed with TN in 1999. I had sinus surgery and a tooth pulled plus an ample supply of Vicodin for pain control before I found the best neurologist who knew what I had ; had successfully treated it before; and she will take of me. She handed me a prescription for Tegretol and told me to get to the nearest pharmacy and get it filled and take 1 immediately. I did. It stopped that killer pain and I cried from the relief knowing I finally found the right neurologist for me.
My experience has been a miracle.
Every step of the way, I am studied because my results have been so unusually powerfully great.
It’s hard. SO HARD while you look for that one great neurologist that’s right for you and, if needed, the best neuro surgeon you can find.
I hear so many different outcomes. Some are fantastic which is what you aim for.
Have great faith when you research your doctors then let them do their jobs and help you recover well.
We are here with all the different outcomes and smilies situations to yours.
Positive attitudes work wonders.
I wish you all the best.
There are other kinds of surgery for Tn besides MVD. I know you tried Gamma Knife (so did I and it did not help me at all). I had a Glycerol Rhyzotomy last November 3 and I still have no pain. I have been reducing medications very very slowly on advice of my doctor so I am still taking Tegretol and Lyrica but nowhere near as much. Most people here in Australia get started on Tegretol first by their doctor and if the side effects bother them they move on to other things (there are many). We also try OTC Medications like Nervoderm patches, Capsaicin Creams, or lignocaine intranasal spray. Hope you find something to help you soon.
I am so sorry to read your story. My pain too started after a dentist procedure & took 4 years ,16 doctors to diagnose , 2 surgeries that turned out weren’t necessary & a wisdom tooth extracted. I’ve had 2 MVD’s & the 2 Nd was almost 8 years ago (11/15/12). It has been a success & highly recommend. The worst part for me was the nausea following the procedure. I send good thoughts your way & hope you are able to have your surgery soon. Have you considered a different dr / hospital? I live in AZ & if I hadn’t met my 2 Nd dr that was local I was considering going to the east coast to Johns Hopkins or Duke where 2 of the best experienced MVD drs at the time were located. Just a thought! This forum really helped me & found my dr through the facial pain association. By the way my dr is Abhay Sanan in Tucson & I think he has to be one of the best if not the best! 
I’m so sorry you had to join this group. I’ve had this for 30 years and Trileptal has always worked. It turns you into a zombie but if you can take 2 at night and sleep through the side effects and it will work through the day that’s terrific. That’s how I dealt with it for years. It’s not working now but keep in mind that I’ve had it a long time. Some people use marijuana for it. I haven’t tried that yet but as soon as my son gets home I’m going to have him take me there. (he’s in Texas on business right now) For me I can’t stand the pain so I use meds. I wish you luck and God bless. Nancy
Hey Coco! Nice to have you on here. Not to sound mean but I wish you never had to find this place. I wish everyone would be cured.
I haven’t been on here in quite some time. I have a reason for that. After years of pain and wishing I could just die it suddenly occurred to me that I was not having any more pain.
I don’t know what changed in me. Actually I do…my friends and family (including church family) never gave up praying for me.
I had never heard of Trigeminal neuralgia until I got it. Then people were popping up with it all over the place. I read up on it to see what caused it. Then I checked on Facebook and found this place. So many different stories. Most spoke of dental work being the culprit. I never understood that. People have been having dental work for years but I never heard of any problems like that. But yet there it was time after time.
My ENT doctor told me it could have come from a head trauma. Or any trauma to the body. I did recalling falling on the ice so attribute mine to that. When i had my very first attack i was home alone. It felt like someone came up behind me and jerked my head back and proceeded to stab me over and over. I screamed and ran to take all my pain pills from surgeries I’d had. I’m positive that God stopped me.
Now I feel that it’s my place to pray specifically for others. Feel free to contact me with any prayer requests. God bless
Hello, I empathetic with you. I too have atypical TN from the aftermath of a surgery on my salivary Gland.
Instead of running to the ER you may want to go to an oral surgeon to numb the area with Novocain. This works for me until I can get my( Oxtellar) long acting tripe pal levels up. Also the act of placing a needle in the area ( called dry needeling) helps to stop the pain pathway.
I have found that narcotics don’t work at all. This is hard to believe, but so very true.
I would go to Mayo Clinic to see what the neurologists there think what needs to be done before I had surgery. They work you up and give you answers in a day.
Good luck, and find a kind oral surgeon.
Empathetize
Hi Kate! Thank you for your story, it truly is a miracle when you hear how someone with our illness can get relief. I have recently contacted my doctor to get me a prescription for Tegretol bc Gabapentin I could not take I had to many side effects on it, it was bad. I get encouraged to hear how awesome it is when ppl get relieved by this awful disease. And I am truly great full in finding this forum where we can read and get more understanding and knowledge of how this disease is.
Hi SimpleMe,! That is an awesome story and yes I believe in prayer and am waiting on the lords healing power!
I’ve been dealing with TN for over 20 years. I was on tegretol until it stopped helping the pain, then I had a glycerol rhizotomy with no success. After great deliberation since I also have many auto-immune diseases, I agreed to have MVD surgery…I was given 50/50 success rate. It was successful and I was pain free for 4 years! When the pain returned I was devastated and wasn’t doing that surgery again. Gabapentin is the only remaining medication that helps me. I went for a Gamma Knife consultation, however I decided not to do it. I hope you have great success with your MVD and your recovery is an easy one!
Hi bubbie3,
I’m sorry to hear that your surgery didn’t work for you, I also had the gamma knife surgery but it was not as success. I’m hoping to get relieved by the surgery.