Hello Everyone! My name is Theresa. I don’t typically join forums but I really need a group. It will be two years on the 25th of this month that my world came crashing down. I decided I wanted to get dental implants because I have already had my gums scraped twice due to periodontal disease. During the extractions, I woke with my body shaking and I had and electric like shocking pain through my body. The surgeon and nurse stepped away until I stopped shaking and told me she was increasing my sedation then I went back under. After the extractions, the surgeon informed me I would have numbness because he couldn’t get around a nerve. I not only had lip numbness that lasted for two months, I had unbearable, excruciating pain. I was never scheduled for a follow-up visit with the surgeon, all of my visits were scheduled with my dentist. After the extractions, I developed an excruciating pain on my lower left side. I kept calling and coming in for office visits over and over for this pain. I would inform the dentist that something was not right with this pain. He kept telling me he could see nothing wrong. I did research and asked about, thrush, a possible infection or allergy. He treated me for all of those but only after I brought them up. He was very irritated and began to get angry because I would complain of this pain. He would end up shrugging his shoulders after each visit and walk out of the room leaving me crying. This went on for 2 ½ months. I expressed to him after my gums healed that the pain on the lower left side was worse than ever and over time it had overtaken my mouth, leaving me in unbearable pain. My last visit he was getting ready to walk out of the room and I asked what we are going to do. He actually said, “about what?”. I said the pain. At that time he informed me I would have to find a Nose Ear and Throat specialist or Neurologist and he couldn’t help me. He said I have to get in touch with my insurance company. Once again, he left the room leaving me crying. After months of searching (there are no specialist’s in this area,) I reached out to Rush Hospital in Chicago. I started seeing a neurologist and pain doctor. I was told I have more than one nerve damaged, I have several nerves damaged. I have been diagnosed with Atypical Trigeminal Neuralgia. This is one of the most painful conditions known to the medical community. I have had 5 nerve blocks and am on numerous medications to treat this condition. I am just now beginning to get some relief. I don’t understand why I was not scheduled to see the surgeon for follow-up care after he knew I had some type of nerve damage. It is pertinent that if a nerve is damaged, treatment should be started right away and the patient should be referred to a specialist to begin steroid and other medicinal treatments to minimize the extent of the injury. My life has dramatically changed. I am unable to wear teeth because of the pain increasing to the max, sometimes I sit at home and cry in pain. I have tremendous guilt because I am no longer the fun, involved mother I used to be to my youngest son who it 11. I am still in disbelief that I have been told I have no more treatment options besides medications, which just are not working or the side effects do not allow me to use them. I even considered taking my life because the pain was so intense. I couldn’t or wouldn’t do that. I not only have 4 boys, a husband, and an extended family, I also had a baby that died at 8 weeks, so my faith tells me that if I ever want to see him again, I will have to continue to live until God decides it has been enough. My medications include Lyrica, Effexor, Buspar, Opana, and oxycodone. I hate taking narcotics and hate even more the label that I have anytime I seek medical care from the emergency room. Sorry my story is long. It actually felt good to get it off my chest.
Hi Theresa,
Same here. I feel like hugging you and we both cry as much as we can. I am also mother of two, 7 and 11 yrs old girl. I try to do things they want but smile has gone from my face. this also started with me about 15 months before when i went for a regular dental visit and the dentist ask me to do a cap on a tooth. Then i started geting pain there. Now this yr my pain has moved to right side too. so i have pain on left and right side. these pains are unbearable when people think oh it is tooth pain and they don’t pay much attention. They would have paid attention if you had cancer. I think in cancer you die one day when you know you have cancer and in ATN you die everyday. I am on tegretol and gabapentin. None of them are helping to make the pain 0. My doctor says, if the pain become 0 then the brain resets. Hope he is right.
Thanks
Swaym
I am glad you found this forum.It is what keeps me going.Without it ,I would not be here.
Now you have found us,things will be a bit better.You will have ideas for your specialist.maybe you want to try topical?
You will have knowledge for your specialist-who knows what you will learn.
Me too,I am dental reject.Go away now.You would think they would know what they are doing.At home we are always told to call before you dig-but when they start digging in your mouth they have no idea where exactly the nerves run.
I found it frustrating,too-the fact that if you treat it right away the chance for success is better.But in Canada they seem to say we didn’t do it-and wash their hands of it.
I found amitryptiline worked for me at low doses but I had a hand numbing thing.But it gave me a break for a month.Without that break I would be dead.
Please stay on this board.All us dental people need each other.
Hugs
Hi Swayam, You’ve have been through so many hardships. I’m sorry. I too began this painful journey with teeth being prepped for crowns on my left bottom molars. My dentist was an idiot, saying “I can’t help you if you’re in pain”. WTF? Anyway I began seeing other dentists, endodontists, oral surgeons. It started on the left and within 6 weeks I had right sided facial pain. I’ve had 3 teeth removed on the left side and I feel pain as if they are still there. Knocking myself out is the best painkiller I found. I take Demerol along with a ton of other meds now. It keeps me alert and dulls the pain so I can get stuff done. It doesn’t last long, but it’s something. I quit driving and quit my job 6 months ago because I became a most unreliable employee. Your doctor saying if you have a day of no pain it will be gone might be the strangest thing I’ve heard yet. I can’t get onboard with that one. I’ve had some good days, and thought IT’S GONE, YEAH!!! Then BAM, no it’s not. Now I just enjoy those good moments and don’t read anything into them. Even after brain surgeries, I hoped the same thing. Nope. I had to eat Neurontin like candy in the beginning, adding Trileptal and Baclofen helped make it “somewhat” bearable. I’m still looking for it to just vanish as quickly as it happened. 3+ years later. I have Bi-lateral ATN, PHN, and GN. Still waiting for them to retreat. But, PHN happened last year. So…who knows? Everyone responds differently and the practice of medicine is only a science. But ,it’s led us here, where we are supporting each other and thank goodness for that. I’m so sorry for your loss and hope you can find some peace and comfort in the near future. You’ve been thorough so much. Sending you - (((Good Vibes)))
Hi I thought I would give Swayam the hope of relief.I liked that response.One good day and you are better. I will wait for that one good day .With hope in my heart.
The doctor was probably giving you something to hold on to.
We are in this leaky boat,but we will make it to shore with each of us doing some job,rowing,bailing,looking for land.
We will get there.
Only thing we need the docs for is our prescriptions.
Hugs
I must say I am very touched by everyone’s outreach and compassion. I am so sorry for everyone’s pain. I truly thought I was alone. I don’t think dentist are properly trained to know the symptoms of possible nerve damage. Actually, I think many of them know, but they are relying heavily on the fact that it will heal itself, which it usually does. I find it very sad that they take that risk when time is crucial in treating the damage. I feel so bad for all of you, and I can relate to those of you that have children. It would be so nice to eventually get to know each of you on a personal level. I will be on and off again reading everyone’s stories and sharing my own. Has anyone else had trouble with nerve blocks and the standard medications not helping? The pain specialist in Chicago said I would not benefit from the surgery because my pain is bilateral which could cause paralyzing. Also, has anyone gone to the emergency room and been treated as is you are a drug seeker? Once again, I am so happy to begin meeting all of you and look forward to hearing from everyone.
Thank you Swayam. I am so sorry for everything you have been going through.
I have tried lidocaine. It feels like it numbs my gums but the pain feels so deep. I am also so sorry Ellen. My heart goes out to you.
Oh my gosh-I am just lucky I am 60-not one of you young ones.
There are longer lasting rubs-and the medicine is in the cream.Just got to find a doctor who will prescribe it.
Nothing seems to get rid of it-but if I can find something that works a bit and do something to take my mind off things then I am good for a few hours.
Spent today looking for beach glass in lake Ontario.Some lady said she found marbles in the lake so of course I had too go running after one.
But I got loads of glass for projects.
Can’t quit yet-I got to do something with all this fabulous beach glass
Hang in there. Many doctors shouldn’t have a medical degree, and we suffer from their arrogance, lack of knowledge and compassion.
Walking along the beach sounds like a bit of heavy Ellen. That is one of my favorite things to do. Unfortunately, I don’t get to do that often. I live in Indiana, a part that has no beaches. 
After 2+ yrs of incredible teeth and ear pain (Post dental work)and many different meds , I started using a compound of capsaicin/lidocaine /amytriptyline/gabapentin. Applying this to the inside of my mouth and gums gave me 1-3 hrs of pain relief and then I started needing it less and less. I went from using it 3-5 x a day to only needing it 1-2 x a week. I am convinced it helped me recover , along with massage therapy and needling for referred pain in the shoulders and neck. Also narcotics never worked for me.
golfgirl, I’m really intrigued by your story, as your ATN sounds similar, and I feel that this could work for me. Unfortunately, I’ve seen a few doctors and all they offer me is oral medication, which I am anxious to avoid if at all possible. I mention topicals and they look at me like I’m a green bug.
I do use topical clonazepam, and that works well for the burning, but not the achey/itchy/tightness kind of pain that I have all day. Chewing gum is the only relief I have at present (Big Red works well, as well as peppermint).
Is the compound you use by prescription from a doctor only? Was this offered to you by a neurologist or dentist? Is this compounded for you by a special recipe devised for you? or a standard recipe? If a custom recipe, can you give percentages?
Thanks!
@golfgirl
I am curious, how do you apply this cream inside your mouth?
I have a similar cream (which also contains ketamine) and I was very curious how one would apply it to the inside of the mouth?
this medication is meant to be used on the skin and i am not sure if its safe to apply it on the inside of one’s mouth (at least mine is, the ketamine would probably be dangerous if swallowed).
H
Sounds like we have /had the same dentist.(I also learned that there was not ONE lawyer in the city of Chicago who felt that a malpractice case in regards to the TN was worth his time.)
All I can say to you is that you will have bad days and worse days! Try to stay positive, keep active, and participate in the lives of your family and friends.
I have found ways to deal with my level of TN without narcotic pharmaceuticals or surgical procedures. I have vowed that I will never have the surgery after my neurologist could only guarantee the possibility of me being in a coma. I have stated before on this forum that I exclusively use medicinal marijuana products to control my TN pain.
I learned to appreciate the meaning of “remission” and thank God for another day of it, one day at a time.
Try to keep your glass half full
I have a cream with ketamine that I use on my gums.It does not stone me or anything but I only have a small spot that is the problem.It was prescribed by a specialist dentist.
Sometimes if you go to a compounding pharmacy they will give you a list of ingredients on a form addressed to your doctor.Because a lot of doctors do not understand compounded medicine it is hard to get.Since my specialist dentist disappeared at the end of the year I have not had anyone who will refill the prescription.
I will just keep asking and use minimal amounts of it.Kind of take the purpose away if I am too scared to use it up-but such is my life.
The cream, well actually it is a paste, was prescribed by an orthodontist that specializes in face pain. It was made at a compounding pharmacy here in Victoria, Canada. It is Capsaicin .025%, Lidocaine 2%, amytriptyline 15%, gabapentin 5%. I was told that the capsaicin, which causes the heat sensation, messes with the pain messages that the overactive nerve sends to the brain. For me the heat feels calming and then after about 5 minutes the numbness from the lidocaine kicks in and gives more relief. The small amounts of amytryp and gaba are probably useful when using regularly but i feel that it would still work without them… so maybe you can get the compound without a prescription if it was just the capsaicin and the lidocaine??
i put a small dab (size of a popcorn kernel) on a q tip and place it above my last upper molar. Then i let it sit for about 10 minutes until it peaks hotness and then i wipe it out. Sometimes at night i fall asleep with it in and it stays for hours but then the gums can get a little irritated … but so what when it gives so much relief. Oh and i have my family physician prescribe the cream for me now so i don’t have to keep going back to the specialist. Good luck i hope you can give it a try. 
Thanks so much golfgirl, for the info. I was anxious to give the capsaicin a try, so I bought a tube of OTC cream that is .1% capsaicin. I’d been considering capsaicin for a while, but this stuff is not formulated for the mouth tissue, and the prescription stuff (Zosterix) was super expensive–like $400!. Wowee, that .1% cream is really hot!, but it does feel better for a while. I think I’ll figure out how to dilute it.
I think I might pick up an OTC lidocaine and give that a shot also. I’ve tried topical benzocaine (Anbesol), it helps, but only very briefly.Hopefully the lidocaine is a bit longer-lasting? It sounds crazy I’m sure, but I also have amitryptiline and gabapentin pills if I wanted to get really creative.
If the OTC stuff seems to help, I could probably get my dentist to prescribe a compounded formula for me. I’m getting super impatient with the other doctors, I feel I’ve got to be a bit more proactive.
Hi Theresa,
I’m so sorry for all you’ve been through, including the callous treatment. In answer to your question, yes, I’ve absolutely been treated like a drug seeker. I barely ever drank, much less took drugs, until this pain became so unbearable. I am on oxycodone, the only thing that has helped so far. I live in Los Angeles and in this big city, very few pharmacies carry it, so I or my husband would drive from place to place, often in vain and always getting that horrible judgmental speech that “No, we do not carry such drugs” or “Absolutely not! None of my patients take that drug!” They were always judgy, often whispering to their co-workers about me and giving me that sense that they just might report me or put me on a list. Out of desperation after driving to 6 different places in one day, I called my neurologist and asked where her other patients get their pain prescriptions filled. She recommended a pharmacy with which she has a good relationship and they are so kind and professional. This is now the only pharmacy I ever go to and I’ve never had a problem since. If you have trouble getting your meds filled, I would suggest asking your neuro or their staff which pharmacy they recommend and let’s hope that we never have to be humiliated like that again in the future. Hang in there. When I feel most desperate, I always tell myself that you never know what new thing science will discover that could cure us. Wish you hope and relief.
I picked up a bottle of a 4% lidocaine liquid with a roll-on applicator. Of course this is not meant for application in the mouth, so I cut the top and popped the ball out, then applied the liquid very sparingly with a Q-tip. I have to say I really like the lidocaine! Much better than benzocaine. I’m sitting here with no need to chew a stick of gum, and that is really nice. Only two sticks so far today.
So I’m thinking I might try and get my dentist to prescribe a mixture of .025 % capsaicin, 2% lidocaine, and perhaps the clonazepam also, in a mucolex oral rinse. I think this combo might work pretty well.