[BrokenNBeautiful]

Because of extensive trauma to some nerves and to the tissues in general from dental work, I now have been diagnosed with trigeminal neuralgia, which is pain in my mouth and face. My teeth are healed now and ready for crowns.

My dentist, endodontist (rc spec) and I cheered today from finding an answer finally.

But I just got a prescription for dilantin, a med prescribed for seizures, which is also prescribed for my condition.

I desperately want to feel better. And I want to be a model patient.

But I just read some frightening reviews from a site called Ask A Patient that said that dilantin causes cerebellum problems.

Now, I took seroquel for insomnia before, which also caused problems like this. Cerebellum controls breathing and involuntary muscles and one night, on Seroquel, I woke up not being able to take a breath. Not congested, I simply could not move my chest muscles or my face muscles and could not swallow well.

Scared me so bad.

One review said "dilantin side effects are worse than seizures".

"don't take this medication".

Maybe I am being too careful.

But this is my body.

I am not a teenager anymore.

And I am very very sensitive to meds.

I am in a quandry now between pain and being scared of an emergency because of respiratory failure.

I would rather take pain.

But I am really upset, too.

I was looking forward to a possibly pain free night finally so that I can sleep!

Billi

[BrokenNBeautiful]

guess I will valdiat myself again.

"hang in there billi"

[BrokenNBeautiful]

and I did sleep better last night.

Without the meds.

I used Reiki on it.

[kindachaotic]

Dear billi, haven't been on here in several days.
So sorry you are now left to deal with something longterm.
Don't really know anything about this med.
There are many anti-seizure meds out there & a lot of them are generic.
With these concerns consider calling your doc about this med or trying another one.
I have fibro & take an anti-seizure med that works well & is generic.

Don't give up, you are doing so well taking care of your body.
Don't give up on a med to help with your pain.

Sending healing, peaceful thoughts your way.

[Fuzzybear]

[BrokenNBeautiful]

Hello.

Last night the pain got so bad that Andy promised to drive me to ER if I had any side effects.

I took the med.

Not sure if it helped or not. Dr. did tell me it takes more than a day to kick in.

thanks for everything guys.

Billi

[BrokenNBeautiful]

no reactions either.

Maybe that cerebellum thing happens when you take it long term?

B.

[BrokenNBeautiful]

I am on my 3rd day of Dilantin.

It made me very tired today.

I did not really like how it made me feel, but so far nothing life threatening.

I am going to call my dr before the weekend and see if I need to increase it because I am only on my initial dose and it's not really doing anything. I hope it doesn't make me more tired.

Bruce wanted me to help him with something today and I was just too groggy.

Billi

i have trigeminal neuralgia ..& take topomax. i started originally on tegretal but reacted to it & it ended up giving me hepatitis. so i switched over to the topomax. it works almost as well...the tegrital worked great but my body just couldn't handle it.

i have issues with headaches & with muscle spasms in my throat (1 side only) when i eat or swallow. it started from a drug resistant ear infection & lasted about 9 months. then it subsided to a dull headache...with the choking & spasms really disappearing for the most part.

every now & again they reappear out of the blue for no reason..like this winter. i am lucky since i do take topomax for my bipolar so it keeps everything in check for the most part..& i can play (for the lack of a better word) up & down to manage the symptoms of both if need be.

it sucks tho. nasty pain. took a long time to diagnose me.

[BrokenNBeautiful]

the meds are not working for the pain.

Dr. did not tell me to increase it so I am stuck. Thinking of calling him to ask about that.

I am still having pain when I bite down on a tooth, next to the one I thought was hurting. I have a bridge on that one. I hope I won't need to have it taken off. If I do, I may have to go back to that other dentist who ripped me off.

I am confused about this.

I was hoping I had a definite diagnosis.

I went to a new dentist; he does not want to touch the bridge. Well, who will? I may need to have someone look underneath it.

And the new root canal specialist will not see me unless I have a referral, even though I explained to them many times that I did not need one!

So here I am stuck.

With pain.

And no help.

I may try a neurologist because I know I really have trigeminal neuralgia, but this biting down tooth pain is concerning me again. And it's another tooth AGAIN. It did not hurt before. I don't know where the pain is coming from NOW. Trigeminal or tooth?

Bruce is sick of hearing about it.

Andy is trying to help me calm down.

Can a dentist touch a bridge someone else put on? Instead of saying, "Go back to your old dentist."

I need help. G*d I'm in pain!!!!

Billi

Finding a good neurologist sounds like a great idea. I know someone who had two episodes with trigeminal neuralgia. She was in agonizing pain. It took a long time to get a diagnosis. Then her doc suggested cutting the nerve. Not a good solution to her. Eventually the pain went away on it's own. The second time it flared up, she saw a neurologist who had experience with the condition. He prescribed something that worked very well. I'll see if I can get more info on the med.
I don't understand the attitude of the new dentist at all. What if your old dentist had retired or moved away. Would you still be SOL?
I sympathize with you.

I wasn't able to get much info. It was an anti-convulsant med originally intended for treating epilepsy. The med you're taking and the two Stumpy mentioned are anti-convulsants. She did mention that it takes a few days to completely alleviate the pain

[BrokenNBeautiful]

It takes a few days, George?

I am not sure if it's helping now. It might be. I will know later, I guess.

thanks for your support, george and everyone else who replied.

As I stated in my "status", my old dentist has excused me from her practice because I told her I could not afford $145. for a deep cleaning/monitoring. I checked with my insurance and this cleaning should cost only $70. She is overcharging me. Also, the bridge was warrantied and she should have not charged me for a visit, either, but she goes, "I will forgive the charge because I am promoting 'free consultations" to promote my business".

I was glad she saw me for free.

She did adjust the bite on my bridge and I might be feeling some better---MAYBE.

I will see after the weekend, then call my old endodontist; she wants to know how I am doing. I am glad SHE cares!

I don't know where this is going.

I am going to find a neurologist and comb my city for a dentist who will see me for less charge, be honest, and treat me with respect!

I am very angry with this dentist. She sweet-talked me and ripped me off.

I am now on a Care Credit payment plan for 4 years! Again, she overcharged me for the ****ing crowns and rationalized it by saying that "your insurance will not cover it because they said that you did not need the crowns."

and later, after she submits the claim, I will call Safeguard and ask them if they really told her that! I did check with Safeguard before I had the crowns put on and they said it should cost less.

That woman!

Oh, man!

And then she excuses me from her practice cause she is not getting any more money out of me! Esp for those flaming cleanings! That she wants twice as much money for because she says "the equipment I am using is not paid for by Safeguard."!

G*d D. It!

sorry.

I am so angry.

Billi

[ECHOES]

Isn't it just infuriating to have it be so difficult to find a good dentist!
That dentist should be kicked out of the Safeguard network; charging you more than her contract with them says she can violates her contract with them.

I hope that you keep feeling better from the bridge being adjusted.

I was wondering if Neurontin might be the anti-seizure medication that is used for nerve pain?

[bipolarmedstudent]

Originally Posted by George H.

I wasn't able to get much info. It was an anti-convulsant med originally intended for treating epilepsy. The med you're taking and the two Stumpy mentioned are anti-convulsants. She did mention that it takes a few days to completely alleviate the pain

You are thinking of Tegretol (carbamazepine). It is an anti-convulsant approved to treat trigeminal neuralgia. It is considered the best treatment for trigeminal neuralgia currently available.

[BrokenNBeautiful]

Originally Posted by ECHOES

Isn't it just infuriating to have it be so difficult to find a good dentist!
That dentist should be kicked out of the Safeguard network; charging you more than her contract with them says she can violates her contract with them.

I hope that you keep feeling better from the bridge being adjusted.

I was wondering if Neurontin might be the anti-seizure medication that is used for nerve pain?

It is totally outrageous. I mean, what if you really need help?!

I am still not sure if it's getting better or not.

I have made a plan to see my endodontist this Wed. Then have the information sent to my new dentist.

Also, in a few weeks, I am going to check with Safeguard and see if she is indeed overcharging me and if this "not covered" thing is just her making up stuff to get my money or not.

If it is, I am going to kick her **s!!!!!

I liked her.

Such a effing shame!

Billi

[Perna]

Billi, there are other, more often prescribed anti-seizure meds for the neuralgia; I'd check with your other doctor (regular med doctor?). I did not like what I was reading about the Dilantin either.

http://www.mayoclinic.com/health/tri...ents-and-drugs

[BrokenNBeautiful]

Originally Posted by Perna

Billi, there are other, more often prescribed anti-seizure meds for the neuralgia; I'd check with your other doctor (regular med doctor?). I did not like what I was reading about the Dilantin either.

thanks Perna.

He told me "I don't know what else to do for you." Another throw my hand in the air doctor.

I think next time I see him I will suggest the other drugs. i know there are others; I looked them up online.

And I will look into this neurologist thing.

I am doing better. Pain, still, but probably not tooth.

I still plan to call the endodontist either way just to say how I am doing.

If I am better, I will not set foot in a dental office until after my birthday.

That's when my next checkup is due.

I pray it's really over.

Billi

[ErinBear]

Hi Billi,

I'm so sorry to hear of your pain, and the problems you've had with dental procedures, too. If it really is related to your trigeminal nerve, sometimes people go through dental procedures, thinking the pain is coming from a bad tooth, when really the pain has come from the trigeminal nerve all along. It can be very difficult to diagnose.

I've taken Dilantin, and it didn't cause any problem with my cerebellum, as you describe. I think that is probably a very rare side effect, and probably at extremely high doses. Sometimes high doses are used over many years for people who have seizure disorders. Tegretol is usually the first-line medication for trigeminal neuralgia, and tends to be more effective. Unfortunately, many of the anti-seizure medications do have side effects, most notably problems with liver function, so if you take them, one generally has to be monitored to make sure your body is tolerating them OK. Drowsiness is also a common side effect, although sometimes your body adjusts and that becomes less noticeable after a month or two.

I now take Topamax, and for me, it is a much better medication. It is not processed through the liver, so it is safer in that regard. It does have other side effects - they all do. It doesn't resolve the trigeminal neuralgia symptoms completely, but it does help. I also have chronic migraines, and with that, it is a miracle drug. My migraines are almost totally gone with the Topamax. In fact, that's why I started taking it. The fact that it helps some with the trigeminal neuralgia is a bonus. Now it is approved as a treatment for trigeminal neuralgia also.

I don't know if any of this is helpful or not, but I'm so sorry you are having this pain, and hope that it will ease somehow soon. There are other things you can do to help, like eating soft/pureed foods. Different things help different people. Some people find that limiting talking helps, and being careful about vibrations and wind. There are other ways of coping, too. The TNA Facial Pain Association offers support and information:

http://www.fpa-support.org/

I'll post the website here for you and any others who might find this thread and also who might have trigeminal neuralgia.

Thinking of you,
ErinBear

[BrokenNBeautiful]

thanks guys.

I am still not sure exactly where the pain is coming from.

I do hope the pain is referring into my tooth thru the nerve and not the other way around.

so many dental x-rays and exams. They don't know what's wrong.

Billi

[BrokenNBeautiful]

well, I went to another dentist---in the middle of the night.

Terrible pain.

he adjusted the bridge again.

Bad bite, he said, that's why it hurts so much.

Also the neuralgia.

I hope the pain is lessened but it could take a while. Did any of the dentists ever consider TMD as a possible reason for the pain? A bad bite caused by that crown might have caused TMD.

[BrokenNBeautiful]

thanks George.

I have considered these possibilites more than any professional has, as they have mostly brushed me off nowadays.

Billi

[gma45]

I hope you are doing better. Dental pain can be so frustrating, hopefully you have found a dentist that will listen to you. You are not alone I understand where you are coming from. Wish I had some answers for you. take care.

Originally Posted by billi_leli

thanks George.

I have considered these possibilites more than any professional has, as they have mostly brushed me off nowadays.

Billi

If I'd known it was contagious I'd have avoided this thread Ouch!!!
Is it getting any better for you? If so then I think I may literally feeling your pain lol.