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Old 04-10-2014, 01:32 PM #1
justjane37 justjane37 is offline
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Default TN as tooth pain

How many members on here with Trigeminal Neuralgia experience tooth pain and started their journey off in the dental chair?

Probably having unnecessary procedures?

I am trying to prove a point that the dental section of NeuroTalk needs to be made more aware of TN.

Please post your dental story.

Thanks
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Old 04-10-2014, 02:27 PM #2
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Default My Story

I was 29 when I began having dire pain in a bottom left tooth, every single day. For three months I was in and out of dentist offices and the ER. I begged them to pull that tooth out. I was given pain pills and was looked at like I was crazy. I was sent to a specialist and was diagnosed with TMDD. I had a night guard made. Still in dire pain. All day, every day. My Dr. finally gave me Amitriptyline and all the pain went away. I stayed on that med for two years. I went off when I wanted to get pregnant and the pain was gone. Until...

Last March when I was 37. I started experiencing terrible pain in a bottom left molar. Then it was in the top teeth, the jaw and into the ear. I already had one TN experience but it really felt like it was the tooth and I was hoping and praying that it was. I went to the dentist. They redid the filling, antibiotics, pain pills, medicated filling and finally convinced me to have a root canal even though there was NO physical evidence of anything happening.

The root canal was successful and did nothing to rid me of pain. Finally conceded that it was TN. Started on Amitriptyline and it took all of the pain away. I have had xrays, scans and an MRI. I now have bilateral TN pain. Not just in the teeth on both sides. Also in the cheek, jaw and ear on the left. And the tongue, roof of mouth, ear and under my lip on the right. Increasing meds and waiting to see a specialist.
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Old 05-18-2014, 08:20 AM #3
IvyLynn IvyLynn is offline
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I had 4 root canals plus one re-root canal before I switched dentists and found one that recognized something else was going on. Whenever I have a TN flare nowadays, it still feels like its in a tooth and I always feel compelled to head to the dentist's office just in case, and he almost never finds anything wrong.
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Old 05-23-2014, 01:51 PM #4
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I go through the same thing. I always think it must be the tooth....it really feels like a tooth ache. I know it is not though.
I have had this long enough to know my patterns of pain. What feels like a horrible tooth ache may be completely gone the next day.
TN is a great faker!

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Originally Posted by IvyLynn View Post
I had 4 root canals plus one re-root canal before I switched dentists and found one that recognized something else was going on. Whenever I have a TN flare nowadays, it still feels like its in a tooth and I always feel compelled to head to the dentist's office just in case, and he almost never finds anything wrong.
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Old 06-29-2014, 03:27 PM #5
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Mine started like dental pain. I went to the dentist to say I'd been woken by pain in the night frequently. I did say that I couldn't pin down exactly where the pain was coming from and that sometimes it was my molar, sometimes my front teeth, sometimes under my jaw and sometimes even in my ear.

My dentist latched on to the 'waking in the night' aspect and suspected pulpitis. Unfortunately, one of the teeth I was having a major spike of pain when I tried brushing it was one that had been cracked 20 years previously. She removed the filling, declared the nerve exposed and decided that it must be the cause of the pain. I was given the choice of root canal or extraction and opted for extraction due to the damaged nature of the tooth and the fact it was already mostly filling.

The pain continued. I visited an emergency dentist who xrayed it and said he wasn't doing anything as the xray was clear.

The pain continued. I went back to my own dentist who did a very thorough test and even used cold spray that crackled and fizzed to test for the cold sensitivity I told her I was having trouble with. Then she replaced an old filling 'in case' and I had an epiphany!
1 - I was numb when I walked out of her room I was numb from the injection, but in agony all down my jaw.
2 - the tooth that hadn't reacted at all in the warm examination room was soooo painful when outside that I couldn't bear to touch it.

I am cross that I lost a tooth to TN but I do recognise that some of it is down to my own decisions.
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Old 07-01-2014, 08:58 PM #6
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It exhausts me to talk about it and no doubt folks here have already heard my story.
To be very brief, mine did start in the dental chair.
My story might be a little different in that I had NO pain to start with. I had an onlay (mini cap) fall off a tooth and I wanted it replaced because a big event was coming up in another city for me and I didn't want problems...was trying to be preventative.
The first dentist had freakish problems putting on a cap (she insisted on doing this instead of an onlay), which started the pain. Other dentists got involved and then I had more pain. Second dentist in the same practice put in a rod (post?) ...can't recall the term. I had electric type horrible pain at that point and started crying instantly and it was hard to keep from screaming.
Had other procedures...extreme extreme constant over the top pain! So, heck YES, I had UNNECESSARY procedures!!!!!!!!!!!
Even had my tooth pulled as one dentist insisted this would help. It did not help.
It's been about two years.
Finally, one oral surgeon (who has a dual degree in that he is an oral surgeon an also a M.D.) told me to see a neurologist.
I actually saw a few. All thought I had nerve damage caused from the dental work, likely from the early work. My pain is likely permanent. It is a horrid experience. I sometimes get nauseas from the pain. I use expensive medicine daily, multiple times a day to survive.
Dx: Atypical Trigeminal Neuralgia
CHOSE YOUR dENTIST CAREFULLY!!!!!!!! And don't hesitate to get a second opinion

BTW, after this happened to me, I was shocked to discover how many people with this problem had it start after a visit with the dentist. It is disturbing (I have other words I could use here) that dentists don't wish to learn more about it in order to take steps toward prevention, etc. CHOSE your DENTIST CAREFULLY!!!!

Last edited by Vowel Lady; 07-01-2014 at 10:01 PM.
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Old 07-06-2014, 02:09 AM #7
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Quote:
Originally Posted by justjane37 View Post
How many members on here with Trigeminal Neuralgia experience tooth pain and started their journey off in the dental chair?

Probably having unnecessary procedures?
1) I had extensive "cosmetic dentistry" to 'preserve my teeth', done by my trusted dentist in Germany. From the moment a bridge was replaced, I had heat and pressure in the upper left alveolar region under that bridge. I was convinced it was due to problems with roots (x-rays were normal). The dentist kept sending me away for years by saying this "could be due to the nerve or the sinus". I felt the pain in the roots of the teeth, which is why I did not believe him. I was not given any additional info about what it meant that this is "due to the nerve".

2) After three years of begging, a tooth on that side was removed. It did seem to cause a bit of relief initially. Like with many patients, it felt as if the next tooth was the culprit. When the next tooth was extracted as well, the pain got much worse, and I had severe, constant, relentless 'vise grip' pain in the palate bone. When I finally did my own research, I learned how many patients go through this experience (extractions not helping and making it worse).

3) There is an article called 'Atypische Odontalgie' by a Swiss professor, Dr. Tuerp. The article is in German and he describes how patients and their family typically beg the dentist to extract the teeth that hurt.

For an explanation of 'Atypical Odontalgia' in English, there is an article at aaom **
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Old 07-10-2014, 01:24 PM #8
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Hi,

I just replied to your other post. Yes people with nerve disorders and nerve injury are left out on our own. I have been dealing with this for the past year and a half straight and am no further ahead. It seems that the more questions I have the fewer answers I get.

Mine was not caused by dental work. I have read so many heart breaking dental stories. I did have an unnecessary root canal in hopes of getting rid of the pain. Luckily, that was the only dental procedure I underwent.

I hope you are able to find some relief.

Quote:
Originally Posted by Haiku View Post
1) I had extensive "cosmetic dentistry" to 'preserve my teeth', done by my trusted dentist in Germany. From the moment a bridge was replaced, I had heat and pressure in the upper left alveolar region under that bridge. I was convinced it was due to problems with roots (x-rays were normal). The dentist kept sending me away for years by saying this "could be due to the nerve or the sinus". I felt the pain in the roots of the teeth, which is why I did not believe him. I was not given any additional info about what it meant that this is "due to the nerve".

2) After three years of begging, a tooth on that side was removed. It did seem to cause a bit of relief initially. Like with many patients, it felt as if the next tooth was the culprit. When the next tooth was extracted as well, the pain got much worse, and I had severe, constant, relentless 'vise grip' pain in the palate bone. When I finally did my own research, I learned how many patients go through this experience (extractions not helping and making it worse).

3) There is an article called 'Atypische Odontalgie' by a Swiss professor, Dr. Tuerp. The article is in German and he describes how patients and their family typically beg the dentist to extract the teeth that hurt.

For an explanation of 'Atypical Odontalgia' in English, there is an article at aaom **
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Old 07-11-2014, 05:30 PM #9
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J Jane...do you mind say what meds you are on now? How often do you see your doc? I see my neuro every three to four months, but sometimes barely make it.
I REALLY hate this...I have several health problems....this is the hardest.
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Old 07-13-2014, 09:46 PM #10
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Hi Vowel Lady,

I am on Amitriptyline. I have been very, very lucky that this med has worked so well for me. I have had my ups and downs and have had to increase it overall as my ATN is more widespread than it was.

I still get flare ups...I am in the middle of one now. The weather and my cycle really affect my TN.

I have had no help so far from Drs. My family Dr is very willing to help me but doesn't know anything about TN. I asked her for the Amitriptyline because it worked for me the first time I had ATN eight years ago.

Two MRI's, both clear. Met with a neuro surgeon who told me I have "neuropathy" not "neuralgia" (whatever that means!) and has sent me on to another neurologist with a three month wait time for appointments! Still waiting for that in Augest.

What medication are you on? I know this started for you with a dental procedure right? How widespread is your facial pain? And are you in a lot of pain?

I know we have spoken before but its been awhile.


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Originally Posted by Vowel Lady View Post
J Jane...do you mind say what meds you are on now? How often do you see your doc? I see my neuro every three to four months, but sometimes barely make it.
I REALLY hate this...I have several health problems....this is the hardest.
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