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Old 08-19-2009, 08:16 AM #1
momof3girls momof3girls is offline
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Default Finally diagnosed!!!

Took my mom to Vanderbilt ER yesterday and they did a CT which didn't reveal anything but they are certain it is TN. It is so hard for the DR's to communicate with her so I brought them pictures of her going through the attacks. So finally they believe it.
They put her on neurontin.


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Originally Posted by momof3girls View Post
Hi,
My mom age 69 had a really bad brainstem stroke back in 2006, she cannot communicate (speak) and cannot
walk.
Back about 9 months ago she had these painful attacks in her jaw area which we thought had to be a really bad
toothache. Took her to the dentist, he found nothing. Poked around and did everything you can think of but no reaction.
But she occasionally would have them still. They would be horrific. It was unbearable for her. And she has a high pain tolerance.
Well the episodes came back last wk, she has them mostly while eating and drinking so I took her to a different more experience dentist yesterday thinking again, toothache. He did x-ray of her whole head thinking
maybe it is a fractured jaw. He probed around her mouth also, no reaction ,then his nurse (who believed me) messed around in her mouth then she witnessed this painful attack, she immediately told him and he suggested trigeminal neuralgia in which he called and made an appointment to a Dr who he thought may know if it is it.
I could not be there today for her app. but my stepfather took her and he is not as outspoken as me. So this Dr after reviewing the xrays and blowing them up and feeling all over inside of her mouth suggested he did not think it was it. He said that if it was it then she would react to certain pressure, while he was putting pressure in all areas of her mouth. BUT i understand that this disease does not always react. It can come on at different times and go away for months, with no problem. This is the case with my mom. During the episodes it always happens when she eats, drinks, or even like yesterday when I put on some makeup on her cheek she had a episode.
My question is do people with this always have constant pain when touched?Do you always have trigger points? Like what this Dr. said when he probed in her mouth. Doesn't it go away at times (remission)? My stepdad has not had much problems with her episodes maybe a couple in the last wk, but my brother and I have had her react more so. We watch her when he works. She grabs the same side of her face-jaw area and basically screams out crying.
I know I am rambling on, hope i am not bothering you, but I know Dr's can be wrong. I prefer to talk to someone who has it.
What do you suggest it could be?
Thank you,
Diana
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Old 08-20-2009, 08:39 AM #2
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Bassetcase Bassetcase is offline
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I'm so sorry that your mom has to endure this monster. Glad they didnt drag her to 2 - 3 specialists before they diagnosed TN. The only meds I have taken is the tegretol, so I don't know anything about the drug your mom was prescribed, but I am sure someone on here could tell you about it.
My heating pad helps my pain better than anything else.

I'll be sending positive thoughts and prayers her way.

Rhonda
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Old 08-20-2009, 12:41 PM #3
JudyM JudyM is offline
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Hi Diana.

I'm glad to hear you took things into your own hands and got her into the ER. Having to wait another week would have been unbearable for her (and for you). My family felt helpless when I would get an attack - I know they wanted to do something, but there was nothing they could do except let me get through it on my own. I was first put on amitripyline (sp?) and, when that did absolutely nothing for me, I did some research on my own and asked the doctor to put me on carbomazapene. Thank goodness, that somewhat dulled it.

As I mentioned, I had the balloon compression last year and, so far so good!

I wish your Mom all the best and I hope the meds bring her some relief.

Sincerely
Judy



Quote:
Originally Posted by momof3girls View Post
Took my mom to Vanderbilt ER yesterday and they did a CT which didn't reveal anything but they are certain it is TN. It is so hard for the DR's to communicate with her so I brought them pictures of her going through the attacks. So finally they believe it.
They put her on neurontin.
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Old 08-21-2009, 01:14 AM #4
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Hi Diana,

I am glad your mom was able to get a quick diagnoses and pray the neurontin can help her. Your a great daughter and I am glad she has you for support... she will need it. Keep in touch, Nikki
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