My latest episode of pain has lasted for three weeks now and twice, within these three weeks, I've developed mouth ulcers ... a line of them at the very top of the right side of my mouth, above my teeth. The first time I just thought it was coincidence but now I think they must be related to my TN. They show up quickly and that area in my mouth feels like it's been cut open.
It makes sense to me that the inflamation of the nerve, therefore the inflamation of the areas the nerve reaches could result in these mouth sores. Does anyone else have them or sores that break out in other areas of their mouth, nose, ear or face?
And thanks, as always, to everyone for sharing your stories.
I have a sore that shows just prior to a TN cluster inside my mouth close to the gum. I also have an area just to the side of my mouth that gets an odd sort of patch over it. Took me a while to figure out it was related.
Hi Karen, I can really sympathise with your mouth sores, I have had terrible sores for the past week so I know how you'll be feeling! Mine, which are due to taking antibiotic tablets, are restricted mainly to my tongue but nevertheless wherever they are maybe you need to get yourself a good gel for the time being to ease the pain. My best course of action was to go into the pharmacist and ask if they had anything to help with the soreness (regardless of the why/how at least you can make a start on reducing the pain) Mine contains 10% ethanol and after a few applications numbs the affected area. I then saw my doctor about it, I told him about the gel of course so now I have more tablets to take but the mouth sores are gradually decreasing.
I've never had cold sores because they're caused by a specific virus. The sores in my mouth now aren't as much sores, as an area that is just raw and ragged. I can't see the area because of where it is (at the very top of my mouth on the right side. It feels the same as canker sores and there is also now a spot on my inside right cheek. These spots hurt more today and my TN achiness and throbbing is focused exactly where that spot in the top of my mouth is. The sore spots are actually more painful today than the TN pain. I swished some hydrogen peroxide around last night and put some Anbesol on the affected area before I went to bed.
This morning I checked online for possible pain relievers. Here's what I found which I will look for in the store later today: Orabase or Orahesive, Difflam and/or Bonjela. Anyone familiar with any of these topical medicines?
I do. have Post Herpetic Atypical Trigeminal Neuralgia. My TN is caused from the Herpes virus. I finally was diagnosed after having sinus surgery, root canaling all my upper teeth left had side, then eventually pulling them all. I was referred to a Maxofacial pain specialist and he iidentified the correlation between my Herpes cold sore break outs and my TN. I used to have pain every time I had a breakout usually breakout and pain were on the same side, in my mouth, tongue, lips and gums. Now I have had it so long that I have constant pain from the virus damaging the nerve.T he HSV-1 virus lives in the the trigeminal nerve and is usually dormant until time of stress, mental, physical or emotional and sometime sun exposure. Valtrex worked for me it keeps the virus dormant and then I have little to no pain. Their is a article about it on the Trigemianl Neuralgia resource (TNA) web site. Its called post herpetic Neuralgia. PHN for short. Many people have been found to have a link to this virus and their ATypical TN. I hope this helps let me know if you cant find that article. I will post the link. Laurie please edxcuse mny spelling and grammar I have had a horrible breakout with pain. YTou are on the right track if this is what is going on.
I am so glad you mentioned it, as I have been on this oral dr journey with him taking photos of my tongue for reference cause of these white patches on the sides near the top but I just thought it might be my teeth rubbing a lot but it scared me thinking that it could be a start of a cancer. I go back to see him in June I think.
I had an adverse reaction (Splotchy tongue, oral lichen planus) to Ativan, in January, 2010. Talk about photos! I had "green tongue", amongst other things.
Early on in my livingwithTN, I chipped some teeth, and had those "white patches", being grateful to have mostly stopped that reactive behavior. And, well, don't you be wasting your time thinking about scary things.
I am not a doctor, though I will be around through June:P) You take good care, bob
Judy D'Arcy-Evans said:
I am so glad you mentioned it, as I have been on this oral dr journey with him taking photos of my tongue for reference cause of these white patches on the sides near the top but I just thought it might be my teeth rubbing a lot but it scared me thinking that it could be a start of a cancer. I go back to see him in June I think.
I definately would go to the doc and get checked for HSV-1, simple blood test. Especially if the TN pain is worse around the time that you get the sores. They dont start out white but when they are healing yes they turn white. Valtrex would control the breakouts thus controlling your pain.
hope this helps.
laurie
Karen Brown said:
I've never had cold sores because they're caused by a specific virus. The sores in my mouth now aren't as much sores, as an area that is just raw and ragged. I can't see the area because of where it is (at the very top of my mouth on the right side. It feels the same as canker sores and there is also now a spot on my inside right cheek. These spots hurt more today and my TN achiness and throbbing is focused exactly where that spot in the top of my mouth is. The sore spots are actually more painful today than the TN pain. I swished some hydrogen peroxide around last night and put some Anbesol on the affected area before I went to bed.
This morning I checked online for possible pain relievers. Here's what I found which I will look for in the store later today: Orabase or Orahesive, Difflam and/or Bonjela. Anyone familiar with any of these topical medicines?
Did you ever get the chance to go to the doc and discuss the sores/pain correlation? I just thought of something that slipped my mind when I was answering you. They have Lidocaine Gel and ointment. It is a prescription and you can apply it to the painful ulcerations/sores. It really helps!
I have similar raw sore spots on my tongue that can be more painfull than the nerve pain in my face. It never seems to go away . My doctor prescribed me a cream to apply to my face instead of taking oral neurontin. i put this on my tongue and gums and bad tooth. This direct to the painful area has helped a lot. It kind of numbs the area for a while.
But it never goes away. The pain comes back..usually after eating...and I am a grazer. I love to nibble all day. I may need to change this habit to control the tongue pain. I have been using the cream for 8 days now. So far i am happy with the help i has given me.
I can find out from My pharmcist what it is made up of. Less side affects when applying only to skin and not taking an oral dose of medicine. At least this is what I have been lead to believe.
hi i have had mout sores same time tn started, what is this and no doc knows what they are. what kind of doc can i go to for this?
Laurie Barnes Keil said:
I do. have Post Herpetic Atypical Trigeminal Neuralgia. My TN is caused from the Herpes virus. I finally was diagnosed after having sinus surgery, root canaling all my upper teeth left had side, then eventually pulling them all. I was referred to a Maxofacial pain specialist and he iidentified the correlation between my Herpes cold sore break outs and my TN. I used to have pain every time I had a breakout usually breakout and pain were on the same side, in my mouth, tongue, lips and gums. Now I have had it so long that I have constant pain from the virus damaging the nerve.T he HSV-1 virus lives in the the trigeminal nerve and is usually dormant until time of stress, mental, physical or emotional and sometime sun exposure. Valtrex worked for me it keeps the virus dormant and then I have little to no pain. Their is a article about it on the Trigemianl Neuralgia resource (TNA) web site. Its called post herpetic Neuralgia. PHN for short. Many people have been found to have a link to this virus and their ATypical TN. I hope this helps let me know if you cant find that article. I will post the link. Laurie please edxcuse mny spelling and grammar I have had a horrible breakout with pain. YTou are on the right track if this is what is going on.
I foolishly made yet another appointment with my endodontist recently, as my pain still feels so dental in origin. He once again confirmed that nothing is wrong with my most recent root canal or any of my other teeth. However, he found and took pictures of some ulcerations on the roof of my mouth. He said he had no idea what they were but if he had to guess he would guess shingles. He did not offer any further testing or treatment suggestions.
You should tell your Dr. If the sores a caused by a viral infection, an outbreak could be the trigger for your pain and even the cause of the nerve irritation. If it is that, then it could be a lot easier to manage.
I don’t get sores, but the area that seems to be the apex of my pain is still sore from my last bad tn1 episode that fired for four days. It feels like a tooth issue, but my dentist says it’s the best tooth in my head .
Hi :) I'm going to figure out better how to use this board so may I say thank you to those who welcomed me and gave me advice. I want to jump in here to tell you how to cure the mouth ulcer problem. I never had that problem until several weeks ago so it wasn't in my history description which I actually created a while back and never finished my sign-up until today. A lot has happened since then.
As for the mouth ulcers, there's a product you can order or buy in some health food stores that is hydrogen peroxide 35% Food Grade. It absolutely cures the mouth/throat problem. Take it on an empty stomach once or twice a day diluted in 3 to 5 ounces of water.
1st week 3 drops once or twice daily
2nd week 5 drops once or twice daily
3rd week 10 drops once or twice daily
4th week 15 drops once or twice daily
5th thru 10th week 20 drops once or twice daily
11th thru 16th week 15 drops twice daily
17th week on ... 10 drops once or twice daily
Most find a good maintenance level to be 5 - 15 drops per week.
I found my mouth/throat ulcers disappeared at the 15 drops level.
Candidiasis sufferers start at a much reduced level, usually 1 - 2 drops daily until they get used to it.
Other than the above I've also had much success with acupuncture combined with using an arm bike machine, (UBE machine), for the treatment of the nerve pain. Dr. Ivo Waerlop in Dillon, Colorado is expert in acupuncture. He has authored books on it and lectures regularly to the chiro community. I am pain free and back to normal energy levels. I highly recommend Dr. Ivo because he knows the trigeminal nerve treatment is varied according to each person's presentation. I cannot thank him enough for what he has done for me and I pray all of you find your ways to being pain free from this awful torture.
I cannot believe that I found this forum. I never understood the relationship between the sores in my mouth and TN. In fact, I was diagnosed as having shingles and sent for a shingles shot. To read this tonight was an absolute blessing. After Christmas I am going to find a Doctor who treats TN. I had an MRI last year and it didn't show anything. but the sores in my mouth have puzzled all of the doctors who I have seen. As one DR said, they aren't sores, they are just red spots in your mouth. (they sure felt like sores to me). I have bookmarked this page and plan to copy it and take it with me when I go to see the next Doctor.
Thank you for this forum and for the person who posted the OP, you have no idea how much I appreciate you for bringing this up.
I have had Tn for 12 years and mine is caused from repeated Shingles outbreaks in my mouth, along my lips and now in my left eye. I take Valtrex on a daily basis but I am a medical mystery. No doctor can figure out why I get Shingles 0over and over again. It has happened so many times on the left side of my face that it has damaged the Trigeminal nerve V1 and V2 sections beyond repair. I live on Methadone, Dilaudid and Valtrex. I am completely disabled and now on SSI and unable to work due to the shingles. I have just been referred to Stanford Medical Center to see a special Immunologist. There is a definate difference between Shingles, and ulcers. U need to find out by a blood test if you have antibodies for HSV-1, HSV-2 or shingles. Valtrex may help you. God Bless laurie
I didn't find the article. Would you mind posting it?
Laurie Barnes Keil said:
I do. have Post Herpetic Atypical Trigeminal Neuralgia. My TN is caused from the Herpes virus. I finally was diagnosed after having sinus surgery, root canaling all my upper teeth left had side, then eventually pulling them all. I was referred to a Maxofacial pain specialist and he iidentified the correlation between my Herpes cold sore break outs and my TN. I used to have pain every time I had a breakout usually breakout and pain were on the same side, in my mouth, tongue, lips and gums. Now I have had it so long that I have constant pain from the virus damaging the nerve.T he HSV-1 virus lives in the the trigeminal nerve and is usually dormant until time of stress, mental, physical or emotional and sometime sun exposure. Valtrex worked for me it keeps the virus dormant and then I have little to no pain. Their is a article about it on the Trigemianl Neuralgia resource (TNA) web site. Its called post herpetic Neuralgia. PHN for short. Many people have been found to have a link to this virus and their ATypical TN. I hope this helps let me know if you cant find that article. I will post the link. Laurie please edxcuse mny spelling and grammar I have had a horrible breakout with pain. YTou are on the right track if this is what is going on.