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Old 07-27-2009, 10:18 AM #1
sjtwxgirl sjtwxgirl is offline
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Mad New Here and just not sure

Hey folks,

Just wanted to introduce myself. I have been going to the dentist for a few months now, trying to solve the pain in my left side of my mouth, until there was nothing left and the pain was getting worse. I almost went to the ER the day before I had another dentist appt to try to find the pain. He said maybe sinuses, so I finally went to my Dr.

The Dr. took x-rays and prescribed 2 strong antibiotics for possible sinus infection, but didn't really believe it was a sinus problem. Drs. office called back a week later and said x-rays were clear and no sinus problems. I went back and he thinks maybe TN...but I'm still not sure. I had a crown put in and 2 fillings that were almost root canals, but the pain is sharp and comes and goes, so I don't think it's tooth or bite problems. I've been on Tegretol for 4 days...300 mg per dose, but it's not doing much good. It takes the edge off when I have a painful attack, but overall the pain has gotten worse over the last few days rather than better.

I can't drink coffee now, but cold liquids are fine. I can trigger the pain by laying down, sometimes smiling, but it's more of a burning pain rather than a shock. Anyway, I also was having major troubles with my blood pressure and thought the pain might go away once the BP went down, but it's actually worse and more frequent. Anybody notice anything with pain and BP. I've also had migraine headaches over the years always on that same side behind my eye. I thought about calling another dentist for a second opinion, but I'm afraid they might just take my money when I don't need the dental work. So confused.
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Old 07-27-2009, 01:17 PM #2
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hello and welcome to neuro talk. Sorry you are here for t.n. but glad you found us.
I dont have issues with my b.p. mine is always on the very low side.
but when it comes to weather and pressure changes that totally affects me and the pain...also when I bend down and the blood flows different then it affects me.

I would suggest you try and find a neuro doctor ..they should be able to answer some questions and know if you have t.n.
I know many people who have sought dental work hoping that would fix things but in reality it was not a dental problem and made things worse. so I would see a neuro you should be able to be referred to one by your general doctor. So far to me and I am not a doctor by any means...but you do describe side affects of t.n. they are many meds that help controll this you just need to find the right one or the right combo .
Please know we are here and will help as much as we can.
sending low pain to you and keeping you in my thoughts and prayers for you to find answers and relief soon. let us know how things are going and how things turn out.\
PEACE
BMW
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Old 07-27-2009, 02:26 PM #3
sjtwxgirl sjtwxgirl is offline
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Thanks, BMW,

I think I'm just still in denial, but just went thru a painful episode that required a 4th Tegretol of the day that is telling me the Dr. is right. Dr. wanted me to try working up to 300 mg, but I think I've found taking 2-3 mg then one more later on when I get a bad attack seems to work better. Only prob is the dizziness, but at least the pain is better. The dose just doesn't seem to last 12 hours. Anyone else just take the regular Tegretol with 12 hours between doses?

Thanks,
Amy
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Old 07-27-2009, 03:07 PM #4
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HI,

Welcome to NT and sorry that you are here in pain.

Well my symptoms are somewaht similar to yours. Although I had a couple of things going on.

I agree with BMW you might want to have a neuro check you out.

I actually found a neuro/dentist at the pain center here is los angeles at cedars. He is excellent and got came up with several solutions.

NOw for me I had two distinct things going on following some extensive dental surgery.

First the dental surgery or shall we call it trauma (implants) reactivated an HSV-1 infection (herpes simplex-1 - yep the cold sore virus - even though I have never had a cold sore). The virus can live in your trigeminal nerve(s) in your jaw and when that nerve is traumatized the virus comes alive and bascially blisters up and travels along the nerve damaging it. This is what is causing some of my pain - nerve pain or what they call post herpetic neuralgia. For me is causes nerve ain which causes the muscles in my head, neck and jaw to cramp causing evenmore pain. I tried various meds and the thing that worked the best has been a muscle relaxer called zanaflex which relaxes the muscles but also works on the nerves. For me this pain is more behind my left ear and back of head (more occiptial neualgia pain)

The second comlication that I have that I urge you to ask your doc about is TMJ derangement. The dentist/doc was the one that figured it out. I had terrible burning for hours on the right side face and jaw. The pain has been excrutiating even though to everyone I look fime. It was more atypical TN pain caused by more of a biomechanical problem from teh dental surgery. I could also describe it as like that side of my face was plugged into a electrical socket for hours at a time. It would even make my right eye blurry and burn. Tegretol did not touch it for me. They also tried me on elavil and neurontin. The neuontin helped for a while but the zanaflex is a secondary TN med according to my dentist/doc that is quited in teh TN book striking back.

The other thing I am doing is volataren gel to help the inflammation in the TM joint.

The dentist/doc orderd a jaw MRI. Like any other joint there are discs in this joint and provide cushion between the bones and allow for your mouth to move and open.

Well according to the MRI I compelely torn (deranged is the proper word) the disc on the right side of my jaw. The dentist/doc thinks its from the implant surgery and my mouth being open and in a bad position for so long during the procedure. The disc is so blown out that I have bone on bone in my jaw and when the msucle spasms start it drives the jaw backwards and ontop of the TN nerve.

He dentist/doc contructed a special mouth piece for me to wear at night and I have special exercises I do throughout the day. He said it would take 8 weeks to heal. I can say the last few days it is better.

Hope that helps. Ask them to do a jaw MRI if they can.
Shelley
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Old 07-30-2009, 09:37 PM #5
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Hi, welcome...you have found a great community of compassionate and knowledgable folks here.
I also have TN and have only been dealing with it for about a year now. I also have Multiple Sclerosis and they are pretty sure that is why I am dealing with this, too. My neurologist has me on Trileptal and as long as I stay on it....it helps! It is a cousin of Tegretol and it really has to build up in your system to give you the relief you are looking for. So, it makes sense that you aren't necessarily getting all the relief you need, just yet. Just stick with it and give it a chance. I'm in the same boat you are in right now b/c somehere along the lines I thought I knew best and quit taking my meds...I was fine for a few months and BAM!! it hit me just this afternoon with a vengeance. I actually thought I was being struck with a migraine at first...but the worst pain subsided for a few minutes and then it was all kinds of pressure in my face. I had actually forgotten how bad it can get!! Jeez.
Good luck and I hope you start to get more relief and all day coverage from your meds.
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