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OCsunshine

Mouth pain / Throbbing

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So I have had this deep throbbing in the left side of my mouth for about six months now. My first dentist said "let's just wait and see if it goes away" (brilliant idea- not!) and my new dentist thought it might be caused by a cavity in the back.

She filled it.

I still have pain.

She took the filling out and put a medicine/sedative in it.

I still have pain.

I am pretty convinced it's not that certain tooth, because the throbbing is like in a general area and it's not really that far back in my mouth. However, the dentist sent me to an endodontist.

I thought I would get a root canal this morning and all would be fine, but the endodontist did all kinds of tests and proclaimed that I had "Abnormal Results Across the Board" but could not find a specific tooth that seemed to be the problem!

He sent me to an oral surgeon who I saw this afternoon.

The surgeon found nothing wrong with my teeth or tissues or anything!

So he suggested I go back to my GP and also see a Neurologist and Pain Specialist.

This is all driving me crazy! I thought that this was just a tooth problem and a filling or a root canal would solve it, but once again (story of my life) I have been claimed a "Medical Mystery."

I am really upset b/c the throbbing is so severe, I take ibuprofen all through the day and take Tylenol PM every night just to make it through the night without waking up in severe pain. I told my doctors/dentists this, but they just shrug and send me to someone else!

So does ANYBODY have ANY ideas? I am desperate for ideas or information! Clues? ANYthing?

Thanks!

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I am baffled by the endodontist that saw abnormal results across the board and sent you on your way. I assume it's because he couldn't nail down one tooth to work on? What if you have an infection in your jaw bone from an abcessed tooth?

Did the xrays show any weird shadows?

Obviously, something is very wrong. I suppose the endo does not want you to pay for a root canal only to find out that the problem is still there. It is quite expensive.

Don't give up.

BTW. I just love seeing your posts and your name OCsunshine. I live in Maryland and it brings a smile to my face to think of OC every time I read your name.

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I'm afraid I haven't the slightest idea about the oral pain. But I did want to comiserate on the continued "Medical mystery" -- it's so wearingly frustrating! :D

Hope you find an answer soon! :rolleyes:

Angela

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I wanted to add my sympathy about the medical mystery label. I sure know what that feels like. I hope you can get some relief soon. Do you think it might be a damaged nerve? What kind of abnormal results did the doctor find?

I can't believe they can't find the source! The mouth is a pretty small place...they should be able to find something! So sorry you are going through this.

Kristen

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Dear Rachel,

Have you been diagnosed with fibro? and if so, could the mouth pain be related? That's about all I can think of, but there may be people on the site who have a better answer. Sorry to hear you're having a rough time.

- Lauren

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Hi!

Still thinking on this one.

Can I ask a few questions to see if I can understand better and then I might have something more to add.

Is the pain there all the time or does it come and go a little?

When you say the left side of your mouth is it your jaw line, your cheek, your tonsils etc?

Does the pain increase or remain the same if you clench your teeth?

Do you have any headaches or sinus trouble or any other symptoms with this or is the only problem the pain?

One thing that popped in my mind was trigemminal nerve pain. Usually that type of pain is not constant though but brushing your teeth, touching your face, eating...things like that...will stimulate the nerve and cause pain.

Have you recently had any wisdom teeth or other teeth removed? I had a bone chip from having my wisdom teeth out that wasn't noticed right away. Eventually it got infected and then the source was obvious but until that I just had a persistent throb.

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Did anybody see signs of tooth grinding (cracked teeth, lines inside jaws)

I have done this for years and the mouth splint made my TMJ pain worse...so I don't use it.. But I get "tooth aches" from grinding but not the severe pain you mention.

I only wanted to empathize and hope you get an ANSWER soon. Can they do nerve pain tests for the face like they do for the body. The EMG tests?

I can't help but wonder if somebody is over looking something. Do you use toothpaste for sensitive teeth? If not, try it...if so, make sure it isn't the type with WHITENER in it as that is terrible for your teeth and can make them sensitive. W/o toothpaste for sensitve teeth I AM uncomfortable.

My ache pain moves around...something I think its a lower tooth, sometimes an upper. It's a drag and a dull ache. So I hope you get an answer soon and keep us posted. I also clench my mouth during the day a lot from adrenalin overload.

I wish they made teeth pillows for the mouth guards and not all that hard stuff that tastes like poison...and no doubt outgasses in our mouths.

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Okay this is all great info.

First I will answer some questions (I appreciate y'all helping me out and trying to get to the bottom of this).

Yes I had x-rays done by the dentist and the endo. They all said they looked normal and nothing was wrong. The surgeon looked at the same x-rays and said it all seemed fine, too.

The pain isn't exactly constant, but it does hurt almost every day (maybe 6 out of 7 days). If I don't take Tylenol PM before bed, it will almost always wake me up at like 1 or 2am throbbing and I am frantically searching for ibuprofen in the dark. It is an INTENSE throb! But then I can wake up fine and maybe spend half the day before it starts throbbing again.

Where does it throb? It's not my jaw. Not my cheek area. It's like mostly down on the bottom of my teeth, it's the front area of my teeth and not the back or deep inside, know what I mean? Like the side of my teeth that touches my lip. It hurts down in the gum line I guess. But there really is no specific place. It radiates all around and sometimes I swear it aches from the top teeth and not the bottom!

Does it increase with clenched teeth? Not that I can tell. It doesn't hurt when I chew or bite or do anything like that. It hurts when my mouth is still and not eating. All of a sudden I am like WHOAH and I frantically search for pain killers to calm it down. :-/

Poohbear, I -DID- have my wisdom teeth out in December! All 4! You had a chipped bone?!? Whoah! It got infected and caused constant throbbing? That sounds really like what I am getting! But I saw my oral surgeon today and he didnt mention that as a possibility at all (he is a very well known, great surgeon with a great reputation).

So I just don't know!

OH, I was also asked about the "abnormal findings" of my endo. Well he did all of those tests... he tapped on my teeth (apparently if you need a root canal, the tapping will hurt on that tooth), I felt nothing bad at all. He did hot and cold sensitivity stuff, no problems at all. Then he did the metal rod test thingy... he held it onto ALL of my teeth on the left side and I felt NOTHING at all. He said the meter went ALL the WAY to the top and I had no reaction. He said that even 'normal people' with a healthy tooth can only handle going 1/3 the way up the meter and they have pain. Soo...? He said he can't believe that all my nerves are dead in all of those teeth, I mean I am only 24 and that would just be crazy!

So nobody knows. I do feel like something is being overlooked. I feel like I am being passed around and no one really wants to bother with it. But it HURTS me and it hurts almost ALL the time and is driving me crazy!!

Thanks for all of the interest! PLEASE keep giving me ideas or questions I could ask doctors or ANYthing! I am going to see my GP on Monday. I don't know what to tell him really... just explain my problem, but I am sure he'll be stumped, too.

:-(

One thing that popped in my mind was trigemminal nerve pain. Usually that type of pain is not constant though but brushing your teeth, touching your face, eating...things like that...will stimulate the nerve and cause pain.

Have you recently had any wisdom teeth or other teeth removed? I had a bone chip from having my wisdom teeth out that wasn't noticed right away. Eventually it got infected and then the source was obvious but until that I just had a persistent throb.

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rachel -

i have absolutely nothing of any use to add, but just wanted to send you (((HUGS))). i can definitely understand the frustration of being tossed around between docs, no one having answers, etc...

i REALLY hope you get some answers &/or some relief soon...hopefully both.

hang in there,

:) melissa

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ok. I'm really tired tonight and having trouble following so forgive me.

Have you had an xray of your sinuses? They could be the culprit especially if you think the pain may be coming from the top.

In regards to where the pain is located, I'm a little confused. Your first reply I took to me the pain was on the side but then your second post I interpreted as pain toward your front teeth. So, if it's your front teeth hurting I doubt that would be a bone chip issue. If it was you back or side teeth toward the back then bone chip could be a possibility but usually with a bone chip you will have pain while eating or clenching teeth.

I'm no Dr but my first guess since the dentists all agree it's not a bad tooth is either sinus or nerves. You may be young for messed up nerves but let's face it....POTS/NCS don't discriminate against youth so it could be a possibility. I would think a neurologist would be a good place to go next and hopefully they could order xrays to rule out sinus issue. It doesn't sound like TMJ pain.

The only other thing that kinda "strikes" me is that it sounds like you get relief from Tylenol. I could be totally wrong about this but I thought that if it's nerve pain that typically tylenol, advil etc don't work on that type of pain which is why they tend to prescribe low doses of anti-seizure or anti-depressant meds for nerve pain. My understanding of this is that because it's the brain misfiring to cause the nerve pain (vs. inflammation) then different drugs will calm the nerve.

Do the glands and lymph nodes around your neck, under you tongue seem normal and "flowing" like they should?

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Okay, so I had the same thing and it was driving me crazy, it could hurt clear into my ear sometimes. I went to my dentist and she said that people who clench a lot cause cranial nerve irritation that can hurt anywhere near the nerve. It's caused from the molars making constant contact. So I got this nifty little device called an NTI. Very non invasive and total bill 110 dollars. What a difference!!!! It takes a few days to get used to, but no more pain. It's a little bite thing that only covers the four top front teeth, but doesn't allow the molars to connect when you sleep. The only draw back is dry mouth for me, but the benefit far outweighs that stupid pain....morgan

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Morgan- Tell me more about the NTI. What does that even stand for? Where did you get one? How did you know that's what you needed.

Poohbear- Nope, no x-rays of the sinuses. I will ask my GP about that on Monday, though!

Sorry I confused you about where the pain is coming from. That is the MOST confusing part of this problem! It's like... it's not my front teeth, and it's not my back molars, it's like the middle of that section. Like halfway back in my mouth maybe. It usually hurts on the bottom row of teeth, like under the teeth. When I said the "front" I meant the front of the teeth out by the lips, not behind the teeth. Does that make sense? Sorry- I confuse myself sometimes. :-/

And yes, I absolutely get relief from Tylenol and Ibuprofen. So maybe it's not a nerve problem? Grrr. So frustrating!

I have been more aware of my mouth today and since so many people mentioned grinding and clenching, I am being extra- aware to keep my jaw relaxed and not clench my teeth. (I don't think I do that normally, but over the past 6 months or so I have been extra stressed b/c we were buying a house.) Maybe that aggrivated something? Hhmmm...

Thanks for all of the help. I have been writing down everyone's ideas and responses and will take them to my doctor on Monday.

Thanks, guys!!!!

ok. I'm really tired tonight and having trouble following so forgive me.

Have you had an xray of your sinuses? They could be the culprit especially if you think the pain may be coming from the top.

In regards to where the pain is located, I'm a little confused. Your first reply I took to me the pain was on the side but then your second post I interpreted as pain toward your front teeth. So, if it's your front teeth hurting I doubt that would be a bone chip issue. If it was you back or side teeth toward the back then bone chip could be a possibility but usually with a bone chip you will have pain while eating or clenching teeth.

I'm no Dr but my first guess since the dentists all agree it's not a bad tooth is either sinus or nerves.  You may be young for messed up nerves but let's face it....POTS/NCS don't discriminate against youth so it could be a possibility. I would think a neurologist would be a good place to go next and hopefully they could order xrays to rule out sinus issue. It doesn't sound like TMJ pain.

The only other thing that kinda "strikes" me is that it sounds like you get relief from Tylenol. I could be totally wrong about this but I thought that if it's nerve pain that typically tylenol, advil etc don't work on that type of pain which is why they tend to prescribe low doses of anti-seizure or anti-depressant meds for nerve pain. My understanding of this is that because it's the brain misfiring to cause the nerve pain (vs. inflammation) then different drugs will calm the nerve.

Do the glands and lymph nodes around your neck, under you tongue seem normal and "flowing" like they should?

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Rachel!

I love being a medical mystery too! :lol: he-he.

Just wanted to say hi...although I have not a clue about your current medical mystery...have you emailed your POTS doc? You could always do that if your GP still has no clue!

I want to know about the NTI too!

I have the old kind that cover all of my bottom teeth...is the NTI better? Just wondering...

Later alligator!

emily

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I have absolutely no idea what NTI stands for. It's like a miniature bite block. Very tiny. It puts just enough space between your molars, so that they can't meet and greet while you sleep. If I am having a lot of pain, I'll sometimes even wear it during the day. It's not like I run a social club or anything for anyone to see.

I went to my dentist and told her I wanted the offending tooth pulled as I was certain that was the problem. She said visually she couldn't see anything and the xrays didn't show anything. So she said that when we clench our teeth, whether on purpose or not, the molars in particular put pressure on some of our cranial nerves, causing irritation of the nerve, which is referred and feels like mouth or tooth pain. If you stop the clenching, you stop the irritation and of course the pain stops.

She just did a little mold of my top teeth, made this little hard plastic thingy and it pops onto my teeth at night when I go to bed. Like I said, it's very small, only goes on the top four teeth. It has also been approved by the FDA for use with migraines. So for those of you suffering from those, that can't take meds, it's worth a try. I don't get migraines, but I wear it every night and I sure know when I haven't...morgan

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Just to add my two cents worth. I was having tooth pain once, and I went to the dentist. In the course of talking with him, I mentioned that I had recently moved.

His eyes lit up and then he said that it is possible that the stress of the move had me clenching my teeth more (wihtout being aware of it) and that could be causing my pain. He told me to wait a few days and see. He was right. The pain dissipated and I think it was from the stress.

Obviously, I've had other problems in which a specific tooth had been identified, and in those situations I needed a root canal.

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Well I am definitely asking my doctor about the NTI thing. Wow! I have heard something about that, actually... a mouthpiece to help with migraines. And I -DO- get killer migraines, so it probably can't hurt to try it!

I did email my Hopkins doc and explained this mouth throbbing (it seems like such a small thing to complain about, but it's seriously like having a THROBBING pain in my teeth almost ALL the time and I am about to lose my mind!!)

He replied with some good insight and ideas. I will go ahead and copy/paste some of it for you guys:

"Rachel: it sounds like it might be an irritation of one of the nerves in the jaw area, given that they can't find anything else specific that is wrong with the teeth. I would think an infection would sooner or later become evident on an x-ray, or with a pustule along the gums.

If it is a nerve problem, I wonder if acupuncture would be help, perhaps. A longer shot is that the throbbing makes me think of a variant of a migraine headache. There has been some work recently on migraine headaches responding to 400 mg a day of riboflavin (vitamin B2), which would be a pretty simple thing to try, without side effects of importance. Riboflavin is said by some to help with other kinds of pain as well, so it would be a low risk thing to try, and wouldn't interfere with the diagnosis of another cause for the pain. Your GP might have other ideas about whether it might respond to an anticonvulsant medication, or how else to treat it once he examines you. Let me know what he says."

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Rachel,

Thanks for keeping us updated every step of the way...I like to hear how things go from step to step!

Sounds like you got a helpful response from your doc...Did you decide to try any of those things? Not a silly thing to email him about as it has really, really been bothering you and you tried exploring many other options first!

I'm gonna look into the NTI thingie too...see if it is better than the type I have now!

Later alligator!

Emily

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[What does "NTI" stand for?

Nociceptive (relating to the perception of things that could be harmful); Trigeminal (the nerve that controls the major muscle of mastication; Inhibition ]

I got this directly from the site: headacheprevention.com and also their company site: NTI-tss.com

and you CAN get anti-inflammatory effect from Tylenol, tho not as good as other drugs. IF the nerves are inflamed ( as in neuritis or neuralgia) then it will help. And if its a small but annoying infection, Tylenol will temporarily help too. I had something similar along my top teeth and they thought sinus (naturally). the best guess after 3 months of it was a combination of blood vessel and nerve inflammation that eventually calmed down.( I had had previously a very aggravated temporal neuritis...thats where the blood vessel at the temple becomes swollen and angry...PAIN...so they figured it must be similar but different location)

You may want to seek out an ENT or someone familiar with facial/head physiology. and also, you CAN have a very small pocket of infection in the jawbone ( as a result of the extraction or even a nearby cavity) that really wont show up on regular xray...MAYBE it will eventually get worse and get visible but maybe not! there are dental specialists ( holistic) that can test for this...I dont know how because mine went away!

Try looking up holistic dentistry on the 'net and then search for jawbone infection and or tooth pain.

I am so glad your endo didnt push for that root canal. So many do them unnecessarily and they end up causing more problems....they are pockets for infection ( there are so many tiny channels in the root that cant be filled) and many alternative practitioners loathe them. Some go so far as to say that an extraction is better than a root canal!!!

anyway I hope you find an answer OR it just goes away like mine did!!!

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OK! I MUST reply to this post for several reasons....

1. I have/had an NTI. It did PERMAMENT, irreversible damage to my jaw because of my TMJ and clenching problem. A Dr. here in Columbus, Oh created the device. There has been documented evidence of many other cases like mine where there is severe, irreversible damage done to patients. I DO NOT recommend the usage of this device. If you are interested in getting a bite plane, PLEASE get one that fits over all of your teeth, otherwise you can misalign you jaw and have permanent nerve damage forever.

2. I can completely relate to what you are saying about your pain. I have a similar situation which was made worse and permanent by the NTI. My pain is definitely nerve pain. I have nerve blocks put inside my mouth around the trigeminal nerve. Instant relief. (of course it only lasted about 2 - 5 minutes. ) I am now permanently on a medication called Klonopin (a nerve muscle relaxant) so that I can close my teeth. The pain is lessened, although still there. It flares whenever I have a migraine (which unfortunately is quite frequently).

Have you had a bone scan done on your jaw? I did and it came back EXTREMELY abnormal. The problem is that NO ONE knows what to DO with it!! (I was extremely ticked when I found THAT out!) I was like, WHY did you send me for the test then??!! Anyhow, perhaps maybe one of your drs could figure it out and let me know!! LOL!!! I really can commisurate because if it is the same this I go through the pain is excruciating at times.

Good luck to you and I wish you the best. Feel free to email me at any time!!

I'm used to being a medical mystery too!

:P:ph34r:

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Mary,

Thanks so much for sharing that information about the NTI...that is good to know!

I have a bite plate that fits over all of my bottom teeth and it sounds like that is just what I should stick with!

Emily

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Mary, can you direct me to this documented information? The NTI has been incredibly helpful to me and I would never suggest anything I thought would hurt people in any way. I had a very similar device when I was diagnosed with TMJ a very long time ago and it didn't bother me either. Can you please give me info on where the documentation is? Thanks...morgan

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Morgan,

I will try to locate it again as soon as I can. I forget if I bookmarked it. LOL. It was one or two yrs ago when I first began having problems and my doctor found the information. Another specialist is the one who has collected and published the study noting the number of patients who have had increased jaw and nerve problems with the NTI. It is more difficult to find, but it is there.

Right now, I am deeply embroiled in getting an OHI-IEP or 504 plan written for my 6 year old daughter who is in 1st grade. She has a cecostomy as a result of her severe motility problems, dysmotility, gastroparesis, hypomotility, visceral hyperalgesia, GERD, redundant colon, mild neuropathy in her small bowel (aka Chronic Intestinal Pseudo-obstruction Syndrome), migraines, abnormal lack of contractions while eating, abdominal migraines, frequently prolapsing cecostomy, EKG changes and POTS. They are refusing to admit that she has a disabilty because she is also gifted and gets "good grades". However, her schooling is obviously effected by her medical handicaps and my husband and I are fighting tooth and nail to get something done for her. We may even have to take this to court. So right now, all my energy is consumed with this. I hope you understand.

In addition. My daughter's pediatric electrophysiologist here in Columbus is an IDIOT!! She had made MULTIPLE incorrect statements regarding POTS and dysautonomia in general. So, I have NO ONE to back me up dr wise in the schools with her dysautonomia. She is running fevers VERY frequently and having to miss multiple days of school because of it. We can't get in to see Dr. Grubb or Dr. Abdullah, the top ped's specialists... I'm flipping out!!

If I remember correctly (that's a little bit of a joke, I'm sure you understand), I think we did a search for NTI and looked for articles in Medline, Medscape and I think one other place.... Since I'm a Psych, I have access to a lot of journals online. But, you should be able to get them too. I'll to get to it soon. Email me again if I don't get to it by Nov. Thanks!!

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morgan,

i realized after i posted that i might have sounded like i was dismissing you or sounding like i didn't trust you...that is not at all what i meant!

i am glad that the NTI has been so great for you...and thankfully you haven't had any probs with it because honestly...that's the last thing you need! another problem! LOL! sorry, had to tease you...

we can't know the side effects/problems of every single thing out there, esp. when they are more obscure or uncommon...so i know you recommended it with complete confidence...

just wanted to clarify!

i will be interested in the info. from mary (in November of course! :ph34r:) i'm so behind too it's not even funny!

okay, off to nap now...surprise, surprise...

later alligator!

emily

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My GP said he thinks he knows what it is!

My diagnosis- Trigeminal Neuralgia.

He prescribed 100mg Neurontin to calm the nerve down (hopefully), a lyme test to rule that out and an MRI of my brain to rule out other problems.

We'll see what happens, but he said he has about a dozen of his patients that have this same exact thing.

Interesting... maybe I am not a total freak. :-P

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