New here, my story

I am a 38 year single mom. my facial pain started in 2015 and lead to 2 root canals and a tooth being pulled. My pain is constant low grade to mid grade in my rigtt canine tooth and the spot where there is a removed molar behind the canine. And a throbbing burning that runs from that area to my nose. I also have tmj. I tried tegateol breifly, neurontin, and now just stated trileptial. No relief yet. But i have a sinus infection that seems to make everthing worse. But the worsed symptom is the anxiety!!! I also have tooth sensitivity on my left side. My neurologist says it is facial pain not tn. What is your thoughts? Also i am a diet coke addict. Today im going to go off it. Anyone have improvement in symptoms when giving up artificial sweetner. Maybe Im grasping straws but i will try anything.

Hi Maria
I don’t know but I did stop all artificial sweeteners about 6 months ago.No change in my pain.but I have only had my burning ,throbbing for over a year now ,so I do not have a diagnosis yet.I am in Canada,the land of free health care.I am hoping it goes away on it’s own.I too had teeth pulled.
Wishing you wellness.

How would you rate your pain. And what works. I just started tiliptal 9 days ago. Too soon to tell. Neurontin dulled the pain a bit.
I work full time. I think i make the pain worse by dwelling on it. Its all day …and moves from my feom tooth to my molars. Right now i have a sinus infection it makes it worse. I have an appointment to Mayo clinic. Ive start b supplements and magnesium as well. Im wondering if laser treatment would help

1 Like

I too hope it will go away…


I also have it over a year and one tooth pulled out. I also have these thing started from root canal from upper molar tooth. For me Magnesium blocked the effect of any medicine. Try not taking Magnesim and see if the Neurotin works better. Doctor says, sometimes magnesium blocks the sodium channel. I have looked at a homeopathy clinic in India. They are going to send me 4 months supply for 250 US dollar. I am going to try it. I read tons of good review on that clinic. If works homeopathy would reduce and eliminate the problem than just the pain management. Good luck

I juat started the magnesuim 3 days ago. I was on the neurontin 3 months. What about tumeric?

Hi Maria,
Your situation sounds very similar to mine. I also have constant pain in my mouth (upper left quadrant) that moves around through the day, as well as burning that seems to come mostly at night. I’ve also had 2 root canals and one tooth removal (and a new bridge, etc…). I deal with it by chewing gum all day. I’ve been offered carbamazepine (sp?) but I’m very reluctant to take a wicked drug like that. Maybe soon if things don’t improve.

I have found that pain killers don’t work well, and give me rebound pain. Opioids make the burning areas much worse. Topical clonazepam has worked very well for the burning pain, and sometimes tightness, but not aching/itching pain or numbness. Valium seems to work the best when things get out of control.

My diet is quite good, with no artificial sweeteners, but I still have to deal with this. I did find that my chronic depression went away about the same time I cleaned up my diet, not sure if that was a coincidence. But it can’t hurt to give up diet soda. Artificial sweeteners stimulate insulin, the fat storage hormone, so they really don’t help with weight loss. They also change the microbiome in the stomach in ways that aren’t helpful.

I’m wondering why you are feeling so anxious? Is it because you are dealing with constant facial pain? Afraid for the future with this malady?

Rihht now the anxiety is from weaning of the neurontin …dodnt have it before. Anyone consider MVD. We have atypical pain. …ive heard it can work? My neurologist says im far from that. But he does not have the pain. I made an apointment at mayo for April…does anyone habe experience with that. Is is it worth it?

I dont have numbness, its more of a gnawing dull pain in my root canaled crown and a throb in my molars. And a buring that radiates up my jaw line. I have mentions i have a sinus infection and my left sinus passages (opposite side) have been buring and my left teeth have hurt. That scares me!!! What if the pain doesnt go away…

Hi there. I am so sorry you are in pain! I am also struggling with this evil disorder. I just discovered high CBD tinctures for dealing with the pain (recommended by my physical therapist) and they seem to be helping a lot with the general anxiety from the shocks I experience all day long and the achiness and facial pain that just made it all worse. I take a high CBD/low THC tincture in the morning (mom of young children here who needs to be functional all day) and then at night I take a CBD tincture with a little more THC to help me sleep (does not make me high - the gabapentin probably masks any effect). I also take 900 mg of gabapentin a day. I’ve been struggling for 2 weeks with awful pain and shocks and this combination seems to be helping me to finally stabilize from this current bout of TN (which was triggered by placement of a permanent crown). I live in a state where CBD is legal thank goodness. It should be legal everywhere based on how much it is helping me! If you have any way to get access to CBD it is worth a try. I also take a lot of other supplements recommended by my neurologist to try to reduce tension and stress which he thinks contribute to it. I cannot tolerate magnesium (achy and heart palpitations) but that is worth a try as well. Hang in there! I am so sorry. Extra hard when you are a single mama.

Hi , I’m also sorry you are in pain and I totally understand the anxiety .
I had a very bad episode last november .
After trying Lyrica for weeks - with no succes - Tegetrol ( 500mg/day ) helped , but I’m still afraid of how this TN thing will be in the future especcially because MS is causing my TN .
My neurologist wants me to slowly stop using Tegetrol . I started 10 days ago by going from 500 mg/day to 400 mg / day and the pain seems to be coming back again ( no stabbing )
I’m getting more nervous each day and I suppose this is not really helping !
How long can you take Tegetrol ?
Wishing everyone no more pain .

I just started triliptal and i have been on neurontin. Weaning off it sucks.

Hi Maria,
Your story sounds very much like mine. I had two root canals (a few months apart) which were unnecessary and when I told my dentist about more jaw pain she said I may need another root canal. I knew this couldn’t be normal but she didn’t seem interested in helping me find the cause so I started investigating on my own with no answers at first. Later when the severe pain started and I had more specific symptoms I was able to diagnose myself and went to my neurologist for confirmation.
Tegretol worked but the doctor took me off because of side effects. I ended up on Neurontin which works for me.
I tend to get sinus infections a lot and when over the top stress hits I can get breakthrough pain.
I use sweeteners and truthfully am skeptical that there would be a connection but you never can tell. Its certainly worth a try. Please let us know if you observe any changes! Here’s hoping it gives you some relief.

Thank you connie!!! That helps alot!!!

What strength neurontin

My doctor prescribed 300 mg per day but I get away with 200 mg most of the time. I’m really fortunate I don’t have to take a lot and that it works for me most of the time. The worst pain was on the right jawline but the upper facial pain is on the left which I believe comes from sinus problems and I also get migraines. Sometimes the sinus pain and headache sort of mingle. Do you get migraines? From what I understand migraine is usually something that accompanies TN.

1 Like

Yea migraines and sinus issues. Seeing an ent as soon as they can get me in.

Hi Maria, just a note about Diet Coke. The caffeine in it is almost certainly causing you a lot more problems than the sweeteners ever will! If you are drinking the caffeinated version, of course (unless it says caffeine-free it has caffeine in it. Here in the UK Coke Gold is the caffeine-free version.) If I have anything caffeinated (tea, coffee, chocolate) more than once in a while it makes my TN ‘sparky’. Although I am in remission currently it can cause quite noticeable breakthrough ‘pain’ and tooth sensitivity. Also the acid in Coke, diet or full fat, is ferocious and damages the enamel on your teeth so if you have any kind of sensitivity in your mouth or teeth you should really steer well away from it.

Additionally, caffeine makes any kind of anxiety worse so that can make pain worse, especially if you are on anti-convulsants, which tend to cause anxiety anyway.

If you find you can’t do without carbonated drinks pick flavours that have no caffeine and that are the least acidic and, of course, try and drink less of them - you can always do what I do and drink it (only occasionally) in very small glasses!

Thank yoj

It sounds like your tn is under control. I dont believe i have true tn. I believe i have nerve damage in my upper jaw by my sinuses on my right side after root canals… and on my left after 2 fillings done at the same time i have alot of senitivity…also my jaws ache at times especially under stress. And my sinuses are crap… Right now i can touch my right jaw joint and feel pain.
i hope the pain doesnt progress. I dont believe …wont believe it will. Just stay the same…hopefully