Dental Help

70% of my pain is dental. I have had extractions, root canal, crowns, and fillings since this all began about 2 yrs ago to try get rid of the pain. Any suggestions for how I can ease this pain?

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Hello,
I am so sorry you have pain. I am a dentist with TN. I hope you are going to a prosthodontist and endodontist for your dental work. A prosthodontist goes to school for 3 years beyond dental school, as does an endodontist. Prosthodontists treat difficult cases, which we are. Too many patients have unnecessary dental work when they have TN, and only the top notch dentists know how and when to treat dental problems. Prosthodontists are expensive, but so is unnecessary dental care and extractions. If you do not have the finances for specialists then get a consultation at a dental school near you.
You will get thru this but only with top notch care.

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Unfortunately I have had several teeth pulled on my pain side. Of course, it is never the tooth, cause the pain is still there. The only thing that has ever helped me is a dose of OXYcodone. (I take the smallest dose available.) it takes the edge off of my pain just enough that I can function. I hope to get help soon.

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Hope you get help soon is what I meant.

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Have you seen a neurologist who specializes in TN? If I had not seen one early in my TN journey I think I would have had several teeth pulled by now. My MVD surgery eliminated most of my pain but I still have occasional mild nerve pains. Some of them feel just like I am having a tooth problem but I know now it’s TN and it will pass. I wish you well and hope you explore some of the options listed on this website. Good luck!

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Thank you for the response. Sorry you have this condition too.

TY for the reply

YesI have seen an ENT, had sinuscope and sinus CT. Endodontist for conebeam and regular x-rays. Primary care. MRI with and without contrast. ERa couple of times. I feel like loser bouncing from one expert to the next. I go usually only go to the doc maybe once every couple of years. This has been a crazy journey. Finally got to see a neurologist. Felt totally dismissed. Offered medication and that’s it.

I am so sorry to learn of your long journey thus far. I was fortunate that my primary doctor prescribed Tegretol 1st thing and when I next saw a neurologist who specialized in TN I had a MRI to rule other other conditions. My follow-up appointment he was able to confirm my diagnosis based on my nerve pain being completely gone. He told me that is one of the defining diagnosis of TN, if Tegretol eliminated the “lighting bolts.” I had the MVD only after I got to the point I could not continue taking the high dosage of Tegretol. Everyone’s journey is different but I truly believe you WILL find what will work for you. Never stop believing. We are all supporting you.

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Hi hope your get better soon…unfortunately I’ve done all that too and nothing worked. The only thing that works for me is carbamazepine. I’ve dealt with this over 15 years, have had Gamma Knife x 2 (worked for awhile) MVD and it didn’t help. I’m sure my TN was caused from a root canal. I wish I could give you words of encouragement, good luck :+1:

I have ATN for 9 years and have pain in my lower right jaw by2 teeth. Have tried gabapentin, baclofen, trileptal whichI couldn’t continue because it dropped my sodium level. Nortriptyline was the only thing that stopped the horrible burning but I cannot take it anymore because I had a problem with my heart, not from the Nortriptyline, but the Dr.said I couldn’t take it any more. My Nuerologist wants me to take pregabalin with the gabapentin but I am scared of breathing suppression because I also take clonazepam. I am afraid to take tegretol because of the horrible side effects. I am going to try a NUCCA chiropractor because I read it sometimes helps TN. My pain is getting worse and most days it is excruciating. Hope you stay pain free. Do you get bad side effects from the tegretol?

I seem to tolerate tegretol okay. I am on a maintenance of 400 mg. a day (to help with the occasional nerve pain). The pain is nothing like I had before MVD. The surgery saved my life as I didn’t know how I was going to live because every movement of talking, eating, etc. was additional excruciating pain. There was no relief, no breaks, etc. The medication was definitely a life saver until I got to the point I could not take a higher dose. Finally I knew surgery was my best option. I have never looked back. I wish you the best and hope you find the choice that will give you the relief you need.

Did you ever have blood problems from the tegretol? When I read the side effects it says it can lower certain blood levels. What were the side effects when you went higher. My pain is unbearable. It also hurts me when I talk and I have a very limited diet because it is hard to chew and many things burn my mouth because I have burning mouth syndrome. Glad you found relief.

Thank you for the kind answer.

Wow such a big surgery and it didn’t work :flushed:

:disappointed: things are so rough awful diseaae

Yes it was awful bc I ended up with a staph infection, had to be opened up to clean out…(the CDC got involved) that didn’t work a week later back in the hospital to have the titanium removed! And was on antibiotics for 3 months thur a pic line. Never want that again, some people go for it a second time…not me. I’ll just keep taking my meds.

I can’t imagine living with this pain all the time! The Carbamazapine helps and so far I haven’t had any blood work come back with my liver showing effects. The Carbamazapine does make me feel a little unstable but over time I got use to it. I just live with memory problems and feeling unstable, its better than the pain. So sorry you have such pain, I really hope you find help soon.

Thank you. What did you get the staph infection from? Was thinking of cyberknife but then I read dude effects could be brain hemorrhage swelling. I also know you usually get some facial numbness from them and can get anesthesia delarosa (donuknow if I spelled it right). They say you can get worse pain than before and there is nothing you can do about it. Can’t imagine getting worse painand suffering even more. I wish there was a magic pill all of us suffering from this curse of a disease could take and our pain would go away. Glad at least you found relief.
Take care

I had MVD and a week later the infection started draining out of my head. My local neurosurgeon opened me up and cleaned up as much as he could and the a week later it came back. The CDC then got involved and told me the infection is not going away unless I have the titanium plate removed bc infection clings to metal. I had that removed…3rd surgery and a PICC line IV so I could give myself 15 minute injections of a very strong antibiotic three times a day for 3 months. That was such an ordeal, my local neurosurgeon tried to talk me out of the MVD, but I went to supposedly one the best doctor known, while he had me under he did a rhizotomy that we never talked about, now I’m numb on my right side and it didn’t help. My life has been turned upside down bc of a root canal that wasn’t necessary. I’m sorry for going on and on, I didn’t mean to tell you my life story. And a long answer to your question :blush:.