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Old 04-04-2007, 09:59 AM   #1
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Atypical Trigeminal neuralgia pain?

Before I get to my question let me give you some back ground on myself. 10 years ago I was in a bad car accident. I had severe right side face damage, including broken nose, fractured eye socket and cheek bone along with dislocating my jaw. I have several plates and titanium screws in my right side of my face. For the surgery they basically had to peel my face back to fix and repair and was done in two different surgeries.

Since then my cheek hurts almost all the time and I get what I call bad flair ups when the barometer changes drastically. Those flair ups kill, bad intense pain that also seem to shoot into the base of my skull. Over the years my doctor has given me lortabs in the fall and spring when this hits me the worse and ibroprophen 800's for not so bad days. When flair ups occur the only thing works is a shot of dilada at the ER.

Through the years it seems to have gotten worse. I have had many Cat Scans and MRI's. Seen an ENT last year and he said that my sinus needed surgery and I had sinus damage. So I had that done and since I couldn't breath out of my right nostral since the accident they fixed that also. Well beside being able to breath better, that's all the surgery did. The pain is still there. So they sent me off to two different Nero Surgeons. Both came back with Atypical Trigeminal neuralgia as my problem. Put me on Predisone and Trileptal and off the lortabs. After my first check up with my Nerologist they uped my Trileptal and then again since it was not helping. I have since stopped taking it because of some side effects. But the pain is still there and my Nero doesn't like to give out pain meds and since I have been referred to the specialist my Family doctor won't see me about my condition anymore. Anyone have any suggestions, lortabs help sometimes if I get prescribed them, and I am tired of paying high ER bills for the really bad flair ups. Help!!!

 
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Old 04-04-2007, 11:02 AM   #2
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Re: Atypical Trigeminal neuralgia pain?

Hey Mike...It sounds like you're a prime candidate for a Pain Management Physician. You need someone who is use to managing pain to get involved and treat you. Historically, surgeons don't like to prescribe opiate pain meds, so that's a blind alley as far as pain treatment with meds goes. When you have CP, you need to see someone that can help you. You're lucky being in Columbus, I'm sure there must be a lot of available options for you to find a Pain Management Clinic/Doc. I too have CP, but have my PCP treating me with medication because we live in a small area and don't have any centers for treatment of CP.

I urge you to look into finding a Pain Specialist right away and I have no doubts they will have more to offer than the Neuro Surgeons you have been seeing for treatment. Good luck to you and please keep us updated.
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Old 04-05-2007, 06:43 AM   #3
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Re: Atypical Trigeminal neuralgia pain?

director is right,you really DO need to see a pain management specialist for your particular pain issue.this really IS the best way to tackle your pain and get the right type of meds and possible therepys that work best for you.everyones pain is different and very highly individual as far as how it is best treated.just because the trileptal(my son actually takes this)didn't work for you doesn't mean that some other of the many different anti S meds wont do the trick for you.they are all a bit different in their overall make up.pain docs just treat pain,thats all they do,unlike any surgeon who does NOT want to be Rxing any narcotics to anyone for anymore than the six week post op period,even that can be pushing it with some of them.surgeons just are not good with any sort of real pain management for anything really.

you just need to go to the experts with this one.you have alot of damage there in an area that is very highly innervated and vascular,that in itself has its own set of possible problems.i wish you luck and hopeyou can find a really good pain doc to help you to deal with this.you shouldn't have to live this way.none of us should.please keep us posted as to how things are going,K?Marcia
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Old 07-28-2010, 08:53 AM   #4
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Re: Atypical Trigeminal neuralgia pain?

Quote:
Originally Posted by miket1975 View Post
Before I get to my question let me give you some back ground on myself. 10 years ago I was in a bad car accident. I had severe right side face damage, including broken nose, fractured eye socket and cheek bone along with dislocating my jaw. I have several plates and titanium screws in my right side of my face. For the surgery they basically had to peel my face back to fix and repair and was done in two different surgeries.

Since then my cheek hurts almost all the time and I get what I call bad flair ups when the barometer changes drastically. Those flair ups kill, bad intense pain that also seem to shoot into the base of my skull. Over the years my doctor has given me lortabs in the fall and spring when this hits me the worse and ibroprophen 800's for not so bad days. When flair ups occur the only thing works is a shot of dilada at the ER.

Through the years it seems to have gotten worse. I have had many Cat Scans and MRI's. Seen an ENT last year and he said that my sinus needed surgery and I had sinus damage. So I had that done and since I couldn't breath out of my right nostral since the accident they fixed that also. Well beside being able to breath better, that's all the surgery did. The pain is still there. So they sent me off to two different Nero Surgeons. Both came back with Atypical Trigeminal neuralgia as my problem. Put me on Predisone and Trileptal and off the lortabs. After my first check up with my Nerologist they uped my Trileptal and then again since it was not helping. I have since stopped taking it because of some side effects. But the pain is still there and my Nero doesn't like to give out pain meds and since I have been referred to the specialist my Family doctor won't see me about my condition anymore. Anyone have any suggestions, lortabs help sometimes if I get prescribed them, and I am tired of paying high ER bills for the really bad flair ups. Help!!!
I've had atypical trigeminal neuralgial for about 4 years now and the best think I've found so far is a Lyrica & cymbalta combination. It doesn't totally take the pain away but it makes it bearable.

 
Old 07-28-2010, 09:18 AM   #5
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Re: Atypical Trigeminal neuralgia pain?

Is your doctor apporved by the facial pain association? There are several in Ohio listed there. They are a great resource and I suggest anyone with TN contact them.

 
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