Wanting input

General General TN & GPN (Old Site)
1

Hello! I am posting here to get everyone's thoughts. I have not yet been diagnosed with any thing so I am turning to you all to see if any of my story sounds familiar and to get ideas.

On January 15th of this year I went to my dentist to fix a broken tooth, I had broken off the back side of my upper rear molar on the right side of my mouth. At this point the tooth was not hurting and after consulting with my dentist we decided to try and fill the tooth first to see if we could save it. The procedure went fine, it took a while because he had to do a deep filling and it was a hard to reach tooth. There was some pain after the numbness wore away but I wasn't too concerned because he said I might be in a bit of pain for a few days because of how deep the filling was.

The pain continued throughout the week and I noticed that it was affecting my upper and lower jaw/gums/teeth on the right side of my face all the way up to my front teeth. I went back to the dentist on January 27th and he said he was concerned that it was my TMJ flaring up from having my mouth open for so long. He saw no signs of infection and the tooth he worked on was only sensitive to firm pressure and cold. They made me a mouth guard to wear at night to keep from clenching my teeth together and gave me some pain meds and said to call them in a few days to let them know how I was doing. I called back two days later and said I thought I was getting better. Then over that weekend I started having excruciating pain that would randomly shoot thru my upper and lower jaw. I kept wearing my guard and taking my meds. The pain eased off for a few days.

The next week I was snowed in my house and couldn't get to the dentist, the pain wasn't as often so I thought maybe the meds and mouth guard were working and to just give it a little more time. This past Friday and Saturday I was in extreme pain that was coming more frequently, finally Sunday night I couldn't take it anymore and my dad took me to the ER. The ER Dr. didn't see any signs of infection, he also felt that the pain was nerve related so he decided to give me a dental block around the tooth that was worked on and said the shot would last about 6 hours. 2 1/2 hours later I have another bout of intense pain shooting thru the left upper and lower jaws and also around my temple. It was weird because I felt pain everywhere but where the Dr. had gave me the block. I have been taking Tramadol, it doesn't help the intense pain but does seem to help me to relax and get some sleep.

I am sorry to write a novel but wanting to give a fairly clear picture of what has been going on.

Have any of you had a similar experience? This pain is unbearable! I have another appt with my dentist Wednesday but am starting to doubt what he will be able to do since it is not an infection.

I really appreciate you reading this and any thoughts comments you have!! Thanks!! Keisha

2

If I were you, before you go back to the dentist, I would look here:

Google Images: Trigeminal Neuralgia

Do any of these look like you?

Many have triggers like touching face while in a shock attack,

wind, blow drier will make it zap or hurt

brushing teeth

Commonly, pain meds do not work

If you think you might have TN, you should cancel your appt. and find a neurologist that sees TN patients. Look at doctors tab above. Even if you have to drive an hour, get the BEST neurologist you can.

If you are worse, not better than initially, I would not do any more mouthguard, no rootcanal, nothing else dental for now.

If you get your diagnosis, then come back and we will help. You will need to learn a lot in a short period of time to get your best treatments.

I would say about half of us--- about 50% here have come out of a dental chair - into Trigeminal Neuralgia.

We are 12 in 100,000. Rare disease that comes on fast.

A neurologist is a good place to start - really the only place to start. But not just any old neurologist!

We are here almost 24/7 here..... Keep posting!

What you can do in the morning - is ask your dental office by phone to call in some lidocaine mouthwash, and lidocaine face cream, or from your regular doctor... if that helps - it could be a way to diagnose it

yourself - if it helps - it really could be TN.

3

Wow--this sounds familiar!! I was diagnosed in June after a similar first flare up. The pain you describe sounds exactly the same!! I swore it was my tooth at first- the dentist said the x ray was fine--but then the pain went ballistic all over the left side of my face-- lower jaw, upper jaw, teeth and behind left eye!! My family doctor started me on epitol (generic tegretol) it is a very cheap and effective medicine for TN. They actually use it to diagnose tn --if it works--you probably have it! Good news is-- it worked at only 200 mg. (100 twice a day) -you feel alittle head rushy at first-- it stopped the pain and I actually went off the meds about three months ago and seem to be in a remission.. lots of people have long remissions!! good you caught it early !! I would go see my family doctor and tell him what you think it is... my doc looked it up and agreed with me!!

4

Here's an update: I went back to the dentist today, we all were in agreement that it is not tooth or TMJ related, there is no stiffness in the jaw joint. Was then sent to my primary care, we talked a little bit about what was going on and she believes it sounds like TN. Was prescribed Tegretol and have a follow up appt in 2 weeks. Today was an especially bad day, I have had over 14 attacks of pain. I am really hopeful this Tegretol gives relief, I am barely eating, drinking or sleeping. Have any of you been on Tegretol and had much luck? Thank you for your earlier replies, it is encouraging when this has been so devastating.

5

My history is long and to much to get into but there were many questions with me too regarding diagnosis. Once I started Tegretol I began to get relief. The response to the Tegretol confirmed that it was nerve pain and not anything else. If you respond to it that may give you some answers. Good luck!

6

I went through something very similar with my dentist; however, it was a little more adversarial mostly because I was in a lot of pain and he accused me of seeking pain meds! Tegretol is one of the staple meds prescribed for TN and from what I have read many doctors utilize it to diagnose TN. I responded very well to Tegretol, after my third dose (24hrs) most of my pain has subsided. I still had some discomfort; however, it was anything compared to the pain I was in.

I hope your pain subsides soon or you at least get some answers!

James

7

Did your dr give you lidocaine mouthwash so you can eat?

8

I wasn't given any mouthwash. Eating tends to start an attack, plus I have no appetite. Today was better, not near the amount of pain, but I was out of it most of the day. I told my husband I felt like a narcoleptic zombie. I started having some pain tonight and wonder if it is because it was around the time for my next dose of Tegretol. It has helped a lot, even if I have an attack it is nowhere near as severe. I really hope to keep improving over the weekend. Right now I am on Tegretol XR 100mg twice a day. I am starting to feel kind of alone in the sense that I can't explain to friends or family what this is like. It truly is debilitating.

9

So sorry for all your trouble! You've come to the right place for support and information!

Tegretol (I take generic) has helped me a lot. I was loopy the first week on it. My pharmacist advised me to take half the prescribed dose and work my way up and not to drive that first week. Heat on my face was comforting. When the pain is bad and eating exacerbates it I try to puree my food to keep pressure to a minimum.

Hang in there!

10

One note on the connections between TN and dental work. When I did a demographics study on 1800 or our members a couple of years ago, I found about a quarter had seen a dentist as their first stop in getting a diagnosis -- and among those, it was the rule that the dentist did NOT recognize the pain as neurological in origin. Inadequate dentist training for other forms of face pain besides TMJ and abscess is a perennial issue in chronic face pain.

It is not always clear that chronic face pain is "caused" by dental work, though there is evidence that at least some cases of trigeminal neuropathic pain very likely are. When chronic face pain is caused by neuropathy (injury) rather than neuralgia (inflammation associated with vascular compressions of the nerves), the treatments may be different. If meds like Tegretol and Trileptal are ineffective for you, then many doctors would do a trial with one of the tricyclic antidepressant drugs like Amitriptyline or Nortriptyline. Chronic face pain is not psychogenic (caused by mental processes). But the TCA drugs have a cross-over effect against chronic pain that is well recognized in medical literature.

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

11

This discussion has been reassuring to me. I’ve recently been diagnosed with TN also. My first trip was to my dentist as well… After much fear and anxiety before reading this, I have hope for pain relief. Right now I’m in a remission, and I have been prescribed Tegretol to take when it comes back. Thanks all for sharing. Keisha, I hope you are experiencing much relief today.

Jackie W.

12

It seems we are always talking about dentists and dental procedures on here. The fact that it is written on a consent form (that no one reads or pays attention to apparently) does not excuse the fact that it seems to happen again and again. And then when it does happen the patient is left in the dark. The dentist usually has no idea what to do. Then in comes the term "TMJ". I was also given this diagnosis twice. I have no doubt that it is a real disorder but I think it is very largely overused by dentists to categorize any problem they don't know what to do with.

My story, and so many others', are very similar. I have no actual idea what is wrong with me. Do I have ATN? Is it nerve damage by dentist? Who knows. Neither my dentist or my doctor seem to know so how could I. My dentist admitted to me that he had five other patients with nerve issues. So is it really as rare as everyone thinks?

It seems that there is a huge lack of knowledge and training amongst dentists and doctors when it comes to any type of facial pain in and around the mouth.

It is heartbreaking and frustrating to read all of these stories that are so similar. This is just my opinion and my rant.

For Keisha...you are very much not alone and you have come to the right place. As was said before, see a neurologist and have an MRI done. Keep up with the medication, there are several to try, until you are out of pain. Read as much as you can and ask any question that comes to mind. Very best of luck on your journey

13

Thank you Red. And thank you for all of the work that you and the other moderators on this site do. That was a very interesting read and it certainly follows what I have seen by members on this site.

14

You are lucky that you had someone that took care of you so well. My doctor is the same, she is very willing to help me but she does not know a lot about TN and I am essentially leading the way with her. Part of the problem, for me, is that dental care is very expensive. I live in Canada and without private coverage you have to pay. I have my own business so I do not have private insurance. We are fortunate in that medical care is completely covered but you have to wait for specialists. I have only seen a neurologist once and had to wait six months. As for the dentist--I have already spent about $2500 on that one tooth. I had two fillings, a root canal and a crown only to be left in pain.

Cleo said:

When this happened to me... one of the first things out my dentists mouth was... you signed a consent form informing you of this complication! When the complication persisted without getting better, I was eventually sent to an oral surgeon who specialized in nerve injury. The main doctor in my life for several years was an oral surgeon. Sure I had other doctors prescribing meds but they could not and did not chart my nerve recovery like the OS did. Only doc beside the OS/dentists who actually touched the inside of my mouth one time was the neurologist.

justjane37 said:

It seems we are always talking about dentists and dental procedures on here. The fact that it is written on a consent form (that no one reads or pays attention to apparently) does not excuse the fact that it seems to happen again and again. And then when it does happen the patient is left in the dark. The dentist usually has no idea what to do. Then in comes the term "TMJ". I was also given this diagnosis twice. I have no doubt that it is a real disorder but I think it is very largely overused by dentists to categorize any problem they don't know what to do with.

My story, and so many others', are very similar. I have no actual idea what is wrong with me. Do I have ATN? Is it nerve damage by dentist? Who knows. Neither my dentist or my doctor seem to know so how could I. My dentist admitted to me that he had five other patients with nerve issues. So is it really as rare as everyone thinks?

It seems that there is a huge lack of knowledge and training amongst dentists and doctors when it comes to any type of facial pain in and around the mouth.

It is heartbreaking and frustrating to read all of these stories that are so similar. This is just my opinion and my rant.

For Keisha...you are very much not alone and you have come to the right place. As was said before, see a neurologist and have an MRI done. Keep up with the medication, there are several to try, until you are out of pain. Read as much as you can and ask any question that comes to mind. Very best of luck on your journey

15

I got busy there for a while. So I started on Tegretol and things greatly improved! Then the darn tooth got infected and I ended up in the ER in the middle of the night in intense pain (totally different kind of pain than the nerve pain). My PCM actually discovered the infection when doing blood work for a baseline to start the Tegretol, just didn't get the antibiotics in me in time to prevent the pain. I was still having breakthrough pain so we upped the dosage to 200 mg twice a day. I am literally over the moon happy that there has been relief. It gives you a whole new perspective on pain.

Here is a question...do most of you only get a month worth of your meds at a time? My Dr. is monitoring me for anemia caused by Tegretol so right now my prescription is month to month. I have to go in and get my blood drawn to get my next prescription. It isn't horrible, but definitely costs my wallet more. Just wanting some of your input on this.

16

I haven't had my blood drawn in a year this May, is that bad? O.o

17

Cherri, It's not wise. Aliver panel should be done at least every six months, possibly more often. if you're on anti-seizure meds. Some of them can cause calcium or sodium deficiencies too. Rarely, there are more serious reactions.

Regards, Red

18

Thanks Red, yes, I take Tegratol :( I have a pain doctor, a Psych guy and Neuro and they have all written the script for me, I have no idea why none of them are interested in my levels? The Psych guy checked me 1 month in and the Neuro last year when she was trying to rule out MS..... I was already mentally questioning my neurologist today, this is just another thing.

19

Cherri, I have no idea why any competent neuro would neglect follow-up blood testing in patients treated with Tegretol. Rarely, this med is associated with bone marrow suppression and serious allergy reactions. See RxList.com for details.

Regards, Red

20

Thank you Red, info much appreciated. I have always been a person that searches for knowledge, especially on medications but I admit that lately I have been way too trusting and have not done that :/ I think I just did not want to know as it is the only thing keeping the monster at bay. In my neuro's defense I did cancel my appointment with her about 5 mths ago as I was doing great and did not think I needed to see her, that's on me but I did just see her and she made no mention of blood work. I see her again on March 18th and I have a lot of questions and I am bringing my book. I like her, her manner is very good, I'm just thinking that she is not too familiar with this so I may have to go elsewhere :( She is kind of pushing me toward a surgeon and I don't think I am at that level yet.