A couple of days ago I was diagnosed with post-tramatic trigeminal neuralgia.
To summarize my story, about 18 months ago I was randomly assaulted in a taxi line. The blow to my face fractured my eye socket and knocked me unconscious - I fell flat on my chin.
Initially I thought it was dental trauma and had a root canal before a tooth extraction and an implant. The pain was gone for about 9 months then it came back in the adjacent tooth. Not really knowing what was going on - nothing showed up as wrong with the X-ray of the tooth in question - they proceeded with a root canal of this tooth.
Since then it has been agony. I saw another dentist for a second opinion and he diagnosed me with post traumatic trigeminal neuralgia and sent me to the neurologist. She confirmed the diagnosis.
Both he dentist and the neurologist seemed very optimistic (almost pretty unconcerned about everything). They put me on oxcarmezipine and more or less said you should be ok in a week to 10 days. 10 days have passed and I'm no better.
Reading this forum and the internet has really worked me up into a frenzy... I have so many questions and I'm frightened. The pain is really only in 1 tooth and is triggered when my tongue brushed the back of it - which happens virtually every time I eat, drink or speak.
Has anyone eve experienced anything similar and can anyone offer any encouragement. It seems like there are a lot of courageous and helpful people on here. Thanks in advance!
Sorry you are going through this. Carbamazepine is a first line treatment for TN regardless of how you came to have it. Curious what dosage they put you on? And if they are going to increase if not helping after 10 days?
These medications take time to start working. They need to build up in your system and dosages need to be increased slowly. I know that it is hard to be patient while being in pain. I am assuming they told you that you will feel better in 10 days because they expect the medication will work?? In my experience it can take two to three weeks for a medication to truly take affect so I would give it another week before conceding that it isn't doing anything. Also Carbamazepine does not work for everyone. There are other medications to try. I think they next one would be Gabapentin. And also some tricyclic anti-depressants can help with constant type pain.
Mine started in my teeth and I had a root canal trying to get rid of the pain as well. So I know what you are going through. Amitriptyline worked VERY well for me at the beginning. It is a tricyclic anti-depressant. It can also be used in conjunction with Carba. or Gaba.
If you have suffered an injury that has resulted in Trigeminal nerve pain there is a chance that it can heal. So that is good news for you. I just want to explain something else so that you don't get sent down the wrong path. True Trigeminal Neuralgia is caused by a compression from an artery or vein pressing on the root of the Trigeminal Nerve. So if you have this nerve pain for another reason, such as injury, or for an unknown reason then it is technically Neuropathy. Just don't get hung up on invasive procedures that are used to treat the compression type of neuralgia because they won't help you.
I would also request an MRI be done. It can rule out other causes and will sometimes show a compression. It does sound like you are on the right track. Ask us anything here. It can all be quite confusing at the beginning.
I am so sorry for the delayed response - I am somehow just seeing this reply now.
I read your story and I hope you are finding some relief - sounds awful what you have been through but I hope you are being positive.
Since my last post a lot has happened. To summarize, I've tried the SPG nerve block and oxcarbazepine but to no avail.
What I find really curious is that the pain is still more or less all around 1 tooth - and especially around the root and below the gum line. It hasn't moved up my face or my jaw. I'm still not 100% convinced that it's not a dental problem rather than TN. I am thinking about extraction of that tooth but am also a little nervous that if it is TN then the pain will just get worse and spread.
Does anyone know how we can differentiate between TN and dental pain? It seems I have 2 opinions for TN and 2 against… Which just adds to the confusion and anxiety.
What you are going through is fairly common on these forums. I wouldn't recommend pulling that tooth. Honestly if you had pain and NOTHING wrong was seen but you had a root canal anyway then the pain was probably never from the tooth. Has the pain gotten worse? Or spread at all?
Mine started off in one tooth and stayed in that tooth for a long time before eventually moving to other teeth and then all over my face. I have heard of so many people that have a tooth pulled, the pain remains or they think its another tooth, so they have another one pulled. The nerve can play tricks like that. I still have moments when I have pain in a tooth for days or weeks on end that I think "it must be the tooth". Well, its not. I go to the dentist sometimes and have xrays, etc just to be sure and all of my teeth are healthy.
What I have been told time and time again is that if NOTHING physical can be seen wrong with the tooth then leave the tooth alone. Unfortunately there are dentists out there that will keep pulling and pulling so it is very hard to find professional opinions that you can trust.
Have your Drs offered any other med to try? Many of us go through trial and error with multiple meds before finding one or a combination that works.
Tricyclic anti-depressants work well for some of us with ATN type pain.
The only other thing that comes to mind is an injection below and beyond the tooth. I have seen that and a couple of people I have met have been through a lot with that. I think there is a full mouth xray that can be done. There is a dental group on here. You might want to post a question in there.
I really hope you can find some answers or relief. Ask anything here.
Can you go into a bit more detail about what you mean by the injection below and beyond the tooth? Is that just diagnostic or could it help?
The most recent dentist I saw was convinced that it was not a neurological issue. However he was a little nervous to extract the tooth. He thought that the damage was to the bone being caused by the tooth acting as some kind of loose lever. So rather than extracting it, he cut it off at the gum line. I currently have a bridge in the place of the tooth - but the tooth is still in there below the gum line. That is where all the pain is so I can't help but thinking there must be a crack or fracture in it. One dentist also says that it sits out of bone and was probably knocked out of the bone when the original trauma occurred. When it first happened, one dentist told me that I needed 2 teeth extracted. The other said just 1. So I had 1 out and the other stayed in. The one that stayed in is now the sore one. I have no pain at the site of the 1 that came out all those months ago. But still have the pain in this one.
When I think about it logically and rationally, I can make a compelling case for it to be the tooth. I can also make a case for it to be the nerve. I have no idea which one to choose. There is no concern about the fact I'm losing a tooth because it's already been chopped in half so there's nothing to loose in that respect. The only reservation is that by getting down there and taking it out, they will traumatize the nerve further and make it worse. So that's my conundrum.
To answer your question about whether it's spread – yes and no. Originally 1 tooth was agony and the other was just slightly painful. The agony one was extracted and that was that. It now has an implant and no problems there. The slightly painful one is now extremely sore. Made much worse by the root canal. So you could say it has spread from one to the other but then you could say it was sore all along and just got worse.
I haven't delved into too many drugs yet (partly because the first ones made me extremely anxious) as I am still 75% in the tooth camp.
Thanks for listening – I am extremely scared and appreciate any and all help!!!
Hi Doogs!I am really sorry(and upset) by what happened to you! I was injured by a dentist 23 yrs ago-he tore cartilaqge and my jaw is locked but goes out of place-go figure! I have have severe tooth and gum pain,including the lower face, that has lasted weeks at a time-a real blast when you have to work with it! Also the other side of my head and face could start in with a deep boring pain that would last for 6-8 hours.These 2 attacks were not at the same time but separate. I have gone 50 hrs at a time w/o sleep with these attacks.Meds were either ineffective or useless and little help at all from the HMO where the dentist was employed!I have the shooting,throbbing pain,including the pickaxe in the eye pain. I have had some pretty bad facial spasms-usually in public! Ok, now for the Good news!! I got into Homeopathy to help heal my husbands bilateral carpal tunnel and it worked! And Homeopathic meds have helped me tremendously! Many Mds think it is quackery or it's a placebo effect.How would a placebo effect touch the kind of pain we deal with?! Besides,our rabbit had hayfever and his eye was swollen shut,draining and tender to touch,and he was making a peculiar respiratory noise. I gave him probably 5 Homeopathic Hayfever tablets within 24 hrs.and he was completely fine! I started taking several diffent Homeopathics including Spigelia(specific to the trigeminal nerve) I also take Swansons Earache Relief, Swansons Nerve Pain Relief, and Swansons Migraine Relief-I take the 3 Swanson ones every day as a preventative and keep Boiron Sinusalia on hand as sinus problems cause a major uptick in TN pain! I also keep Hylands Migraine on hand as it helps with throbbing facial pain.I do take Hypericum Perf as it is supposed to help with nerve pain and healing and I do tweek things to get the best effect.I have no side effects whatsoever.I found an article that might be helpful to you-"Homeopathy For Acute Dental Pain"Healthy Homeopathy.(site) They do mention Coffea Cruda and Chamomilia for pain-I know that coffea Cruda is in the Swansons Migraine. I don't mean to write a book here, but I wanted you to know about these things. The Homeopathic meds are surprisingly affordable,thank goodness! I wish you relief soon!
I'm back! I see that I did make a number of spelling errors-I apologize! That boring pain that I would get in my ear was accompanied by intense burning over 1/2 of my head and face-I never get that anymore except occass. in my ear and just around it and it's gone within a minute with the earache med! God Bless You!
My name is Louise. Just wanted to know what kind of medications you were on before you went to the homeopathics? I have severe burning pain on the left side of my face , around my teeth , gums, and tongue; taking neurontin among other things with little relief. Don't know what else to do at this point. I've tried acupuncture, UCC, and herbal supplements. Nothng worked.
How did you come off your meds if you were on them? And how did you start these at the same time? Please let me know soon. Thanks.
Louise
PS m regular email is ■■■■■■■■■■■■■■■■■■■■■■■■■■ ; you can use that if you prefer.
Louise,I don"t know that this will reach you,as I have send 2 messages tonite with no luck-sorry! I took NeurontinX1 with bad effect and stopped. I took Ultram for pain with little to no help and stopped it with no effect. But if you have been on something along time or if you take a narcotic or antidepressant for pain have your MD oversee this as you could get into serious difficulty if you quit suddenly on you own.I take Swanson products(Homeopathy line) Nerve Pain Relief/Earache relief/Migraine Relief(3 different meds) also Boiron Sinusalia-very affordable! I hope you get some relief-I was in a lot of misery and am much better!Best Wishes,Louise!