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Trigeminal Neuralgia Message Board
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Old 12-18-2002, 07:05 PM   #1
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Unhappy Trigeminal Neuragia anyone

Anybody out there been diagnosed with Trigeminal Neuralgia?

I just curious to see how other people are coping.

Any success stories?

 
Old 12-18-2002, 08:52 PM   #2
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Yes! I had trigeminal neuralgia 30 years ago. It was such horrible pain, the worst I've ever had! The ENT put me on Dilantin, an anti-seizure med. and that helped right away. Six weeks later, the dentist discovered a badly infected back tooth on that side. He pulled it & things really improved. For over a year though I couldn't bear to have the wind blow on my face & kept it covered outside. After that it was fine & has been ever since! There's hope, don't give up. I know how this feels and my heart goes out to you but know there are even newer meds today that can give relief. God bless. Please keep me posted & write back if you want to talk.
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Old 12-20-2002, 07:20 PM   #3
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I'm glad you were able to rid yourself of your TN symptoms. I've been dealing with it for 5 years.

I've considered getting my wisdom teeth removed just in case the TN was triggered by that but have yet to do so. Your message might sway me to have this done, since the dentist recommends that I have them extracted anyways. Although my wisdowm teeth aren't problemetic right now.

I've also had some TMJ problems on the left side of my face where I experience the TN symptoms.
I have seen 3 neurologists and they have all come to the conclusion that there is no correlation between TMJ and TN.

Also, the medications (Neurontin, etc) do not work for me so I have stopped taking them.


John



 
Old 01-13-2003, 10:31 PM   #4
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I've been experiencing similar symptoms and am going to see a neurologist soon. I've had alot of dental work done over the past few years and this seems to trigger the painful episodes of TN. Does your pain ever subside? For how long?

 
Old 12-12-2005, 09:28 AM   #5
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Re: Trigeminal Neuragia anyone

My elderly mother has had TN for over 20 years. One side is worse than the other so I have to remember which cheek to kiss. She also takes dilantin, which helps, but doesn't take it away. She has false teeth so having a bad tooth removed isn't an option. I feel sorry for her.

 
Old 12-15-2005, 09:51 AM   #6
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Re: Trigeminal Neuragia anyone

My Neuralgia is from my inoperable aneurysm pulsating on my cranial nerves inside my brain....It has been doing it for 5 years and the pain is horrible.....I take a bunch of meds to help it...but I stay in pain daily~~24/7~~all the time. But , Hey, without the meds. I'd be in a fetal position holding my head~ moaning in groaning wishing for death..I know I wouldn't be able to take it for long ...that is for sure...It's awful...HUgs, Cindy
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thuderbolt headahe Jan3,01 DX with a inoperable aneurysm. severe headaches everyday for 9 years. SSDI for severe pain R/t inoperable aneurysm pulsating on cranial nerves.

 
Old 12-15-2005, 12:53 PM   #7
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Re: Trigeminal Neuragia anyone

My sister had this for years and finally had surgery to correct it. It's called microvascular decompression. You might want to research that option. It worked very well for her.

 
Old 12-16-2005, 06:57 AM   #8
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Re: Trigeminal Neuragia anyone

I tried to have surgery..Jan 2005...It was a BIG failure...They put in a stent (NEUROstent ) and was going to put in coils..But I had a big blood clot develope...So , he stopped the procedure and used some drugs to break up the clot..He tried to bend the stent in a way that it was going away from the cranial nerves....But it didn't help. I've been in more pain since the surgery...It's been allmost a year. I've had 2 angiograms checking on it...It's a failure...But will have another angiogram in Jan, 2006. Last Angiogram in August, Blood was filling up the annie..Then the Nuero Surgeon said the Surgery was a Failure..For me to take Narcotics the rest of my life..That he wouldn't touch me again..I scared him. I guess...And me too. Hugs, Cindy
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thuderbolt headahe Jan3,01 DX with a inoperable aneurysm. severe headaches everyday for 9 years. SSDI for severe pain R/t inoperable aneurysm pulsating on cranial nerves.

 
Old 12-16-2005, 07:17 AM   #9
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Re: Trigeminal Neuragia anyone

Cindy: That doesn't sound like what my sister had done. They didn't use a stent. They wrapped the nerves in teflon like material after separating them. They also tacked the arterial loop out of the way (it was pressing on the nerve). Her surgeon was in Pittsburgh but I don't recall his name. He studied under the man who invented the procedure.

 
Old 12-16-2005, 08:06 AM   #10
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Re: Trigeminal Neuragia anyone

I know, I had a aneurysm pressing on my cranial nerves..The stent was used to bend it in a fashion ~~AWay from the nerve in question...But it didn't work..I was also trying to get my inoperable annie repaired at the time..He was hoping it would work..There was no promises..After 5 years. I have alot of nerve damage...Hugs, I'm glad your sister is doing well, Cindy
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thuderbolt headahe Jan3,01 DX with a inoperable aneurysm. severe headaches everyday for 9 years. SSDI for severe pain R/t inoperable aneurysm pulsating on cranial nerves.

 
Old 12-16-2005, 08:10 AM   #11
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Re: Trigeminal Neuragia anyone

Cindy: Thanks! Sorry yours didn't work better...I know this is a very painful condition...hugsto you, too. Titchou

 
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