I am so confused

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1

I am glad I saw this site when I was up all night in terrible pain. I was diagnosed with TN back in Feb, since then I was on tegortal(SP) and doing pretty well with little aches and pains.

On Saturday, I was in so much pain that Advil or pain pills could not kill the pain, by 10:30 PM Sat, I had enough and went to the E.R. which is where they confirmed the diagnosis.

I have run to dentists off and on through this entire process. Sometimes they find something and sometimes they don't I have to admit, my teeth are terrible so I never know if it is really them or not?

I have an appointment with my neurologist on Wednesday, but had to make an appointment today with my dentist, hoping it was something like a tooth rather than this TN pain!

At first the dentist tapped on all my teeth and nothing seemed to hurt. " The dentist stated this is not your teeth, until, he put his finger on my lower gums by jaw and I almost jumped out of my chair. He felt I needed two root canals that were possible infected! So he gave me an antibiotic and told me to start on that and that I will see him Thursday!

I decided to keep my Neuro appointment, as I am so confused?

The pain I had over the weekend was terrible, stabbing like pain, to the point I wanted to hit my head against the wall. Now the pain is ore achy and localized? That is what confuses me?

If there is no real test to determine TN then how does a doctor come up with a diagnosis?

How does one live with such pain!

I have a knew job and cannot afford to miss any more work because of this kind of pain!

I also have Lupus and have been told that Lupus can cause TN Pain?

So any thoughts regarding this process would help!

Thanks,

Marne

2

Its okay to feel the way you do, but personally wait and see your neurologist first before you start in with your Dentist. This is the first time I have missed work because of this and yes I would never wish this on anyones worst enemy. Stay strong and hold on until you see your neurologist. There are so many drugs that can help and yes you will have flare ups. Unfortunately thats the it seems to go.

Keep in touch

Vicky

3

Hi again Marne. I had went to a dentist too before I knew this was TN. (An emergency room doctor diagnosed it a month later.) I was for sure this kind of pain was my teeth and he wanted to pull one. I kept thinking about it and I've had toothache pain before but this was waaaaaay beyond anything I've ever felt before. The electric shock like pain and white hot, and didn't seem to even touch the tooth the dentist thought was the problem. I'm glad I went finally to the emergency room and they told me that it was TN.

But now I'm really anxious and scared but do have a first appt with the neurologist. Have no idea what will happen, just wish it was over. I have heard many times that dentists misdiagnose this and its a shame. Especially with no insurance its not something I can just run around to all these doctors trying to figure it out. Hopefully this neurologist is one of the good ones and will treat the pain too and not just give me some pill for the nerve problem. I DON'T want to be a guinea pig.

Anyway just be careful and I would love to know how your appt. goes. Good luck to you and keep in touch please. : )

Victoria

4

Marne,

I recently watched a video online from a doctor specializing in the surgeries to correct TN from John Hopkins. If I remember correctly he said that an MRI can be done, specifically a FIESTA MRI, to see if a blood vessel, trigeminal nerve, or whatever they see to determine TN can be discovered. I also highly recommend some personal investigation as to there is TONS of information about TN online, if you haven't already.

I hope you find your answer ASAP!

-Korie

5

Hi Marne,

I agree with Vicky...PLEASE see your neurologist before you have un-necessary dental work like I did. I've heard of too many members here who, like me, have had dental work that didn't help, because it was the TN - not a tooth issue. I've had 5 teeth removed because I didn't have the money for root canals. I even believe my Atypical TN was caused by damage done during a dental procedure.

Also keep in mind that some dentists are only vaguely knowledgeable about TN. It's in the best interest of their bottom line to think we need expensive dental work to solve the problem. It's unfortunate, but we have to protect ourselved from dentists and even some of our doctors too. The more we know about TN the better able we are to demand the treatments and care that we need and deserve!!!

Hugs,

Gloria

6

Marne,

I totally agree with everything that's been said about staying away from root canals at the moment. Putting fingers in your mouth at the back of your gums, under your teeth, can not only irritate the nerve but may flag up the muscle spasms in your jaw leading down to your neck. I specifically do this regularly to actually release the spasms but I've been doing it for a while & wouldn't recommend it if things are really bad.

7

I saw the neurologist today! He gave me some good news I guess. He told me to think of my TN like my lupus flares! It is bad right now, but he feels he can get it under control with medications. He then discussed if that does not work there is radiation that we can do on the nerve, but that was his last option. He states I have room to move up on the anti-seizure medications!

I told him the pain is so intense that I have not slept in days, that I needed something to sleep, but I do not want a narcotic medication to do so! I am afraid to get addicted to that stuff.

So he gave me something, but I cannot remember the name right now!

He also ordered an MRI as I guess this is a symptom of M.S. and he wanted to make sure that there is nothing on going on in the brain. That made me feel good that he was being proactive.

I have to stay positive right now as this pain is so intense that if I should really start to think about what is happening to my body I will fall apart totally! Right now I need all the strength to fight this pain and get my ass to work!

I hope and pray that we all get some relief soon!

This is a terrible thing this TN

8

I am so glad that you got some positive news from your Dr. today! :) Have faith in him on the meds and please get the MRI done. There are things that they can see and not see :). Which is good if they don't see anything. I have known that I have TN since last October and my meds have been adjusted and added from time to time. I do feel that is what I have to do stay healthy and happy. Just remember with these meds you will be able to do everything you normally do. I still drive my Harley, I have flown to GA and back, I still work and do things with friends and family. The positive outlook!!

Keep strong, we are here for you!

Vicky

9

I agree with the recommendations of not doing any dental procedures until your TN is fully diagnosed and under treatment, the "dental pain" may be part of TN, so it will be gone. You WILL get relief, don't worry. The medication will give you some side effects like don't remembering things and feeling slow, but those will pass with time. Like the Lupus, sometimes there will be flair ups. The pain can get under control. It is horrible, horrible pain, we all know here, but it will get better.

Wish you the best.

Carolina