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trigeminal neuropathy - scared !!!!

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Old 09-18-2009, 04:35 PM   #1
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birgit81 HB User
trigeminal neuropathy - scared !!!!


I have been diagnosed with trigeminal neuropathy which makes my whole left side of the face tingle and my lower molars hurt like toothaches.

The casue i have been told is probably a root canal or the wisdom teeth extractions.

I wish i could turn back time.

I am so scared that this pain will never go away! I am only 28 and i cant imagine to live with this for the rest of my life.

Do you have any experiences that the pain goes away?

I am currently taking 75mg of Amitriptyline which takes the edge off but does not remove the pain completely.

Any answers, I would really appreciate

Thank you so much

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Old 09-18-2009, 05:16 PM   #2
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dianne04 HB User
Re: trigeminal neuropathy - scared !!!!

Hello, I dont have any expirience with this type of pain, but I do however have Small Fiber Neuropathy...and I do know the fear and being overwhelmed with a scary dx....hang in are stronger than you think. Take it one day at a time if you can.

Old 09-19-2009, 02:55 PM   #3
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Re: trigeminal neuropathy - scared !!!!

I have this too. Don't be scared, it sucks but nothing to be afraid of. There is a really good site by a facial pain society lots of info. I take tegratol for mine, it helps alot, I hardly ever get the lightening bolts in the last several months since I started this med. I started with Trigeminal when I was in my early 20's, I had periods when it would go away for months at a time or even a year, then the attacks would come back, It took years and I mean like 15 years to get a diagnosis, finally from a neurologist. I am almost 50 now, I have pain all the time now, but meds help. There are many treatments, I have not used any but meds but if the meds quit working I will try something else.
Again, I know it is disturbing and hard, but you can handle this, there is alot of hope with this neuralgia, there are specialist neurologists who mainly deal with facial nerve problems. I wish you good luck, your not alone, I've made it 27 years with this condition, Its bad, but you can make it.
PS, I have even seen some support groups at larger hospitals in cities, I know there is one in Cincinnati ohio.
Fibro,neuropathy,TN, failed acdf 3 level, stenosis of the spine, cvid

Old 12-06-2009, 11:21 AM   #4
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Erch HB User
Re: trigeminal neuropathy - scared !!!!

I am going through the same thing I understand... check into your root canal have xrays done.. infection can make you feel like its a nerve disorder look into research on cavitat machines which find infection that regular xrays cant see. Root canals are bad I had the tooth pulled and had surgery where they scraped my bone and cleaned canals...I will never have another rc again.

Old 12-06-2009, 07:17 PM   #5
Join Date: Dec 2009
Location: LOGAN OHIO
Posts: 1
Re: trigeminal neuropathy - scared !!!!

my husband had tn. it took over 3 years and me to get a diagnosis. he first has a deep cleaning done and then had a root canal done on a perfectly
good healthy tooth. he had sinus surgery done and allergy test done, before
they finally figured out what he had. he took all the durgs for tn and the pain
kept coming more frequent and about may of 2005 his pain was so mad he
could not even move. he went to osu hospital and had micro decompression
sugery done. and when he woke up no more pain except for the sorness of
the operation. but it did take 3 years for anyone to get it correct.

Old 12-11-2009, 07:22 PM   #6
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Re: trigeminal neuropathy - scared !!!!

There are more effective medications for TN than what you are on. Some of these include, Trileptal, Neurontin, Lyrica and Topamax. I think that you are being undertreated. Also bear in mind that this TN problem often seems like it is coming from a tooth when, in reality, it is not. I had $2500 worth of work on one tooth before I realized that I really did not have a problem with the tooth after all.

Old 12-29-2009, 09:24 PM   #7
Join Date: Aug 2007
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atlantagal HB User
Re: trigeminal neuropathy - scared !!!!

I have been suffering since 2001. Shooting pain in my left ear. I take DHA - Fish oil and believe me when I say, it keeps it at bay. If I feel a tingle, I take neuratin or Tegrital and pray. It's been working well. Good luck. And keep me posted. ~laura

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