If anyone is willing to share your story with me it would be appreciated friend me and send me a message or write on here. I'm convinced me TN was caused from dental work! Did they damage the trigeminal nerve? How did yours start?
My pain developed slowly, starting with bearable zaps, I thought I must have a bad tooth but my dentist insisted all was well.Had pains for 2 years before presenting at ER as unable to eat drink or open mouth. Quickly diagnosed and have followed the normal route of severe pain then remission then severe...... etc. I have been told that the neuro thinks it could go bilateral after a second opinion on my MRI.
Update: it's official, I have TN I and TN II on opposite sides.
I started with Type I in 2005
I developed Type II on the other side in 2011
I have not had both pains at the same time, yet!
I have Type I on the right, Type II on the left.
My Type I pain is more severe and debilitating.
My Type II pain is constant, throbbing pressure and aches and burns.
Mine started as Jackie’s did with bearable zaps in Feb. Dentist couldn’t find anything. They kind of stopped in Apr. with just a little zap every now & again. Then it came back with the bearable zaps in July. They got a lot more frequent in Aug, so I went back to dentist. He saw a tiny crack in my tooth and thought maybe I needed a crown. He prepared my tooth for the main crown & gave me a shot and put a temp on it. It got so bad after that that the pain was bringing me to my knees! He then sent me to an endodontist and I had a root canal. Pain STILL there. Went back to the endo and he couldn’t find anything, but told me by my symptoms that it sounded neurological. Neuro office said they can’t see me til they get a diagnosis so they know WHICH doc to put me with, so I went to my nurse practitioner. She recognized the symptoms right away, put me on Tegretol, sent me for an MRI, etc… I had immediate results from the meds and I am continuing to see her for this unless it gets to the point that my meds don’t work at all. Then I will go to neuro and see what they can do.
I'm convinced my TN II started with medical negligence and the following dental work. Firstly, I wore braces on my lower teeth when I was 25 or so and my front teeth received a massive stripping (not sure if I'm using the correct word here) in order to fit them into the limited space in my mouth. I was happy with the esthetics of the result. Then I started to experience pain which I mentioned to 3 (!) dentists, only the third one took an x-ray, the two dentists before her sent me home saying I have beautiful teeth and that it's normal to feel pain from time to time, especially after the removal of braces. Well, it showed up that I had infection in the front teeth. Then followed a line of dental treatments on two of my teeth - root canals and root end surgeries, in the meantime I also developed TMJ disorder and my teeth no longer meet, which is frustrating. To cut long story short, after about 9 months of intense pain I had a nervous breakdown, ended up on a sick leave and had time to think about and research my symptoms. Upon my request, I got a referral to see a neurologist from my dentist, was put on Neurontin, which caused a bad depression even suicidal thoughts. I was weaned off, switched to Lyrica and I also got prescribed antidepressants from my psychiatrist. Now I'm feeling a great deal better than I was a few months ago, although there is even on a good day this tension in my teeth which won't leave. I still have bad days - maybe two every week but at least I get a break from the pain. I try to do things for myself, like going to a physio/acupuncturist every week, which also helps...I'm lucky that I've managed to keep my job so I can pay for these "treats" out of pocket. I saw a TMJ doctor recently and he says I need to sort my neuralgia first only then he'll see what he can do about my slipped discs - a sort of Catch-22 situation, needless to say, it gets tiring and frustrating from time to time:) Most recently, I've been referred to the Institution of Experimental Stomatology to see if I'm alergic to some of the material in my mouth.
Mine began not with dental work but with cosmetic work for a thread vein on my upper lip. I felt the pain of the nerve shoot up my face as he touched my lip with the laser ( which is meant to blast the vein). The vein disappeared but within 36 hours I developed electric shocks of TN1. I got the TN1 under control with meds and was able to come off them slowly but TN2 began on the same side ( TN2 was mild compared to TN1) After a year the TN2 gradually got better.
I do believe my TN1 and TN2 was caused through trauma.
look under the "groups" tab above - and read postings or join the "dental procedures" group
Mine started when an oral surgeon jerked my neck while I was under anesthesia - caused whiplash = TN
Jackie, Are you a candidate for any of the surgeries. I cannot say that I am dealing with this well and have an appointment to look at my surgical options this coming Friday.
Chris
Jackie said:
My pain developed slowly, starting with bearable zaps, I thought I must have a bad tooth but my dentist insisted all was well.Had pains for 2 years before presenting at ER as unable to eat drink or open mouth. Quickly diagnosed and have followed the normal route of severe pain then remission then severe...... etc. I have been told that the neuro thinks it could go bilateral after a second opinion on my MRI.
Update: it's official, I have TN I and TN II on opposite sides.
I started with Type I in 2005
I developed Type II on the other side in 2011
I have not had both pains at the same time, yet!
I have Type I on the right, Type II on the left.
My Type I pain is more severe and debilitating.
My Type II pain is constant, throbbing pressure and aches and burns.
My pain started as an aching tooth. It began at a trip to the dentist about a year ago. She filled what we thought was root exposure and the pain came back. She also did an x-ray and it showed nothing. The MRI and CT scan also showed nothing. I have type I. I am only in this since early August......not very patient to work through the medicinal regiment. The medication has worked until just this week. I cannot stand the upset to my life.
Christine Larson
hi Christine, my neuro finds me a good candidate for surgery but whilst I am managed with meds she is holding back. Please bear in mind that if this has only been your life since August there is hope. My pain was out of control April -September 2010, I was in despair and joined this group in June of that year. I learned so much and then I started seeing my new neuro and in 6-7 weeks I became managed and remain so. I do not have great health and therefore surgery is a last resort for me personally. I don’t blame you at all for seeking surgical options, please keep me posted.
Christine said:
Jackie, Are you a candidate for any of the surgeries. I cannot say that I am dealing with this well and have an appointment to look at my surgical options this coming Friday.
Chris
Jackie said:My pain developed slowly, starting with bearable zaps, I thought I must have a bad tooth but my dentist insisted all was well.Had pains for 2 years before presenting at ER as unable to eat drink or open mouth. Quickly diagnosed and have followed the normal route of severe pain then remission then severe… etc. I have been told that the neuro thinks it could go bilateral after a second opinion on my MRI.
Update: it’s official, I have TN I and TN II on opposite sides.
I started with Type I in 2005
I developed Type II on the other side in 2011
I have not had both pains at the same time, yet!
I have Type I on the right, Type II on the left.
My Type I pain is more severe and debilitating.
My Type II pain is constant, throbbing pressure and aches and burns.
Best of luck to you with your other health issues. If I were managed I wouldn't be looking. I was hoping for well management but zap....It started to be hit this week. This thing is terrifying.....Our friend Dixie is a great source of inspiration. I follow your posts and you are just awesome!!! Thanks for being inspiration to us all.
Jackie said:
hi Christine, my neuro finds me a good candidate for surgery but whilst I am managed with meds she is holding back. Please bear in mind that if this has only been your life since August there is hope. My pain was out of control April -September 2010, I was in despair and joined this group in June of that year. I learned so much and then I started seeing my new neuro and in 6-7 weeks I became managed and remain so. I do not have great health and therefore surgery is a last resort for me personally. I don't blame you at all for seeking surgical options, please keep me posted.
Christine said:Jackie, Are you a candidate for any of the surgeries. I cannot say that I am dealing with this well and have an appointment to look at my surgical options this coming Friday.
Chris
Jackie said:My pain developed slowly, starting with bearable zaps, I thought I must have a bad tooth but my dentist insisted all was well.Had pains for 2 years before presenting at ER as unable to eat drink or open mouth. Quickly diagnosed and have followed the normal route of severe pain then remission then severe...... etc. I have been told that the neuro thinks it could go bilateral after a second opinion on my MRI.
Update: it's official, I have TN I and TN II on opposite sides.
I started with Type I in 2005
I developed Type II on the other side in 2011
I have not had both pains at the same time, yet!
I have Type I on the right, Type II on the left.
My Type I pain is more severe and debilitating.
My Type II pain is constant, throbbing pressure and aches and burns.
Mine seemed to start after periodontal surgery. My neurologist said that over half of his TN patients can correlate the beginning of their symptoms to recent dental work. That is not a fact, that is just what my doc told me. He said that just the stretching of the nerve with the mouth open could cause this, or nicking the sheath of the nerve. I don't necessarily think it has to be caused by negligence, it just happens. Again, just from what I was told.
Mine also started with bearable snaps, so I kept mentioning this to my dentist. It was four years, before the unbearable snaps started. I have been dealing with the severe pain for seven months, but has been controlled with meds most of the time. I do not like the meds, so I am trying some other options along with neurontin. It is only since I came to this site that I realized I had TN1 and TN2. Good luck.
Mine did not start out from dental work. In early March of 2011 I start getting a crushing pain in jaw. I remember the first time was while I was at work. After a few hours it went away. Over the few months it progressed more frequently and the pain started getting more intense. It was towards mid Or late June I went to my doctor about (I knew it was not a tooth issue as the pain was not like a tooth ache and I fear the dentist) it, I thought I had some weird infection some how in my jaw that was causing the problem. After listening to me explaine the pain my doctor knew what I had. It was not till a few months later after I had all the tests done to rule out anything else that my neuro confirmed the diagnosis. Since then it has been a battle of controlling the pain, and for some reason my doctors have all agreed I have a difficult case of TN and it seems to be very progressive with. Meaning the pain is hard to control and I’ve already been ruled as a bad canadit for surgery, so that’s not an option right now. But that’s my short and quick version of my tale with TN thus far.
Hi Kari- do you know why they feel you are a poor candidate? Do you just have pain on one side of your face? Have you sought a second opinion. Not impressed with my neurologist and may for hitting the road for a new one shortly.
Christine Larson
There is an article on "Who Gets TN" under our Face Pain Info tab, that I think you should read. I analyzed demographics of about 1900 of our members, with a particular focus on 650 members who first visited a dentist when their face pain started. The evidence of patient reports suggests that the state of training for Dentists is abysmal with regard to recognizing problems that are not dental in origin. Likewise many members attribute their face pain to dentist error in over-filling root canals or injecting anesthetic directly into the Lingual nerve. There are papers in medical literature which discuss the role of dentist error in causing facial neuropathic pain.
Regards, Red
Hi,
Two and a hald ears ago i went to do several dental works (cleaning + fillings).
Aftet the dental cleaning i felt "weird" sensitive all my mouth - but nothing dramatic.
Then a "simple" 'deep" filling in tooth no, 37 (molar left lower jaw) and a day and a half after i gave a bit in something and the terrible pain started,
Terrible pain ....went to tens and tens of doctors. can'd describe it all now.
A month after the dental filling - the pain was 24/7 like Hell . I insisted a root canal -was done a root canal that didn't help.
the findings :
Done a "full body bone scan" that showed "something" in the mandibule area. doctors couldn't explain that.
(after a year repeated this test - and the test was fine).
first MRI -fine.
CT- fine.
For 2 years - a bit large lymph glands under the jaw. on the pain side. doctors can't explain that.
done an ULTRASOUND - was fine.
The shape of the bone in one side of my face - changed.
Started having neck- shoulder blades pain.
All this added more to the confusion. it sent me to different direction .
maybe a pressure from the shoulders or neck caused it ?
maybe the lypmh nods that are enlarged says it's an infection...
etc.
This year - I couldn't suffer the pain and pulled out two teeth. the "original" tooth and the wisdom tooth next to it
didn't really help. like something always aching in my gums. and stuck there.
i also was diagnosed with several diagnosis :
- TN -
- defenetly Not TN
-ATN
-nerve Neuroma
-TN cause by blood vessel pressure
-injury from the dental injection
-and of course - Pshycological
This year - dont another MRI -and now they see a major blood vessel pressuring the nerve. was recommended an MVD.
Logically - my "TN" was caused by a dental work. cause it strated right after.
But now - they recommend an MVD. but if the injury is "local" an MVD wouldn't help a bit.
so - i guess like many i understand your position and thoughts , we are in the same place.
how is the characther of your pain ? is it "shocking /stabbing" pain like classic TN with no 24/7 pain ? or is it 24/7 pain ?
my story is deffernt than yours.. but still - i sympathize with the sentence that you have 2 a bit bad days a week - but you are grateful for the rest of the week. it's sad that we have to be grateful for a few "good" days a week.. . but at least it's better than 24/7 pain all day.
i do "wonder" something what is the cause... i mean - many "develop" TMJ disorderes etc.. but is the TMJD a result of the pain or the cause ? etc.
i mean - does all the other symptoms suddenly appear (like people say they have TN1 and "developed" TN2" ) - does it because that a person so much time in pain - develops more pain ? maybe he tense his muscles more etc.
Oldriska said:
I'm convinced my TN II started with medical negligence and the following dental work. Firstly, I wore braces on my lower teeth when I was 25 or so and my front teeth received a massive stripping (not sure if I'm using the correct word here) in order to fit them into the limited space in my mouth. I was happy with the esthetics of the result. Then I started to experience pain which I mentioned to 3 (!) dentists, only the third one took an x-ray, the two dentists before her sent me home saying I have beautiful teeth and that it's normal to feel pain from time to time, especially after the removal of braces. Well, it showed up that I had infection in the front teeth. Then followed a line of dental treatments on two of my teeth - root canals and root end surgeries, in the meantime I also developed TMJ disorder and my teeth no longer meet, which is frustrating. To cut long story short, after about 9 months of intense pain I had a nervous breakdown, ended up on a sick leave and had time to think about and research my symptoms. Upon my request, I got a referral to see a neurologist from my dentist, was put on Neurontin, which caused a bad depression even suicidal thoughts. I was weaned off, switched to Lyrica and I also got prescribed antidepressants from my psychiatrist. Now I'm feeling a great deal better than I was a few months ago, although there is even on a good day this tension in my teeth which won't leave. I still have bad days - maybe two every week but at least I get a break from the pain. I try to do things for myself, like going to a physio/acupuncturist every week, which also helps...I'm lucky that I've managed to keep my job so I can pay for these "treats" out of pocket. I saw a TMJ doctor recently and he says I need to sort my neuralgia first only then he'll see what he can do about my slipped discs - a sort of Catch-22 situation, needless to say, it gets tiring and frustrating from time to time:) Most recently, I've been referred to the Institution of Experimental Stomatology to see if I'm alergic to some of the material in my mouth.
In 2001 my physician just thought that I was a high anxiety individual who was having tension headaches. After trying a few meds, I wound up being on Xanax. I took those for 4 years. They worked fine for the pain, but not for my temperament. After coming off of them, I began another search for a med that would work, but when the pain had started up again it was in my teeth and jaw now…rather than my just the top of my jaw (and up towards my temple.) After going to multiple dentists I have repeatedly been told that I have wonderful teeth and bone structure and there are no problems. The pain continued to progress until my physician decided that maybe I had TN and sent me to a neurologist. I have had a few traumas to my neck/head area and I do not believe any of my dental work caused it. No one is really sure why I have it…It simply amazes me that it is something that no one can figure out. I thought a neurologist would know “everything”. 
My neurologist wants surgery to be a last ditch effort, as she has patients now who have had adverse effects afterwards. (issues involving speech and paralyisis) A friend of a friend who has it(they met on a forum like this) kept a diary of her patterns of pain…and upon figuring out that it was around her menstrual cycle they put her on an estrogen patch, and she’s been pain free since. I am fixing to try this out. Her husband was a doctor of some sort. My pain is almost constant…but worst during that time. (pain meds can’t even touch it during that time) I figure it can’t hurt to try any darn thing at this point. ANY relief is welcome, yanno?!
elstep :)
Because your pain started after a cosmetic surgury - does that mean you didn't almost went to dental/mouth specialists?
which doctors except Neorologists did you go to ?
Was this procedure an IPl laser treatment ? light pulses etc ? it's really interesting.
elstep said:
Mine began not with dental work but with cosmetic work for a thread vein on my upper lip. I felt the pain of the nerve shoot up my face as he touched my lip with the laser ( which is meant to blast the vein). The vein disappeared but within 36 hours I developed electric shocks of TN1. I got the TN1 under control with meds and was able to come off them slowly but TN2 began on the same side ( TN2 was mild compared to TN1) After a year the TN2 gradually got better.
I do believe my TN1 and TN2 was caused through trauma.
Opinions will vary on this, but TMJ has long been criticized as a very imprecise diagnosis that covers a multitude of symptoms. From what I've been able to observe, TMJ is probably over-diagnosed by dentists who have a financial self-interest in treating it. Likewise, the training of dentists in general practice is very deficient with regard to recognizing both nerve damage due to previous dental procedures, and trigeminal neuropathy and neuralgia.
Regards, Red
Donna Cook Turnage - your case sounds like CLASSIC TN... maybe a specific MRI will show a blood vessle and you'll be canadate for surgery ? cause as i started to realize - those with certain sympthomes.. are much much much better canadates that thier 'problem" is due to some blood vessle pressuring the nerve...(you, and also Jackie's story)... so maybe...
Donna Cook Turnage said:
Mine started as Jackie's did with bearable zaps in Feb. Dentist couldn't find anything. They kind of stopped in Apr. with just a little zap every now & again. Then it came back with the bearable zaps in July. They got a lot more frequent in Aug, so I went back to dentist. He saw a tiny crack in my tooth and thought maybe I needed a crown. He prepared my tooth for the main crown & gave me a shot and put a temp on it. It got so bad after that that the pain was bringing me to my knees! He then sent me to an endodontist and I had a root canal. Pain STILL there. Went back to the endo and he couldn't find anything, but told me by my symptoms that it sounded neurological. Neuro office said they can't see me til they get a diagnosis so they know WHICH doc to put me with, so I went to my nurse practitioner. She recognized the symptoms right away, put me on Tegretol, sent me for an MRI, etc... I had immediate results from the meds and I am continuing to see her for this unless it gets to the point that my meds don't work at all. Then I will go to neuro and see what they can do.