[momof3girls]

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

[JudyM]

Hi Diana

I hope I can help with some of your concerns. You are correct, the pain can come and go - when you are pain-free, you are able to eat and drink. When you have a bout of TN, you can barely open your mouth to drink, let alone chew anything.

When I had my first bout, I wasn't able to put make-up on my face because it hurt so much. If I were to have taken a feather and brushed it against the side of my face, the pain would have been intense. It is the most debilitating pain I have ever endured.

I had a balloon compression operation and I've been pain-free for over a year. What a blessing, as the meds were making me very groggy.

My suggestion to you would be to get your Mom in to see a neurologist. They will be able to diagnose better. In my personal opinion, it sounds as if she may have TN.

I hope you and she can find the answers you need in order to help your Mom through this very difficult time.

Kind regards,
Judy

[momof3girls]

Originally Posted by JudyM

Hi Diana

I hope I can help with some of your concerns. You are correct, the pain can come and go - when you are pain-free, you are able to eat and drink. When you have a bout of TN, you can barely open your mouth to drink, let alone chew anything.

When I had my first bout, I wasn't able to put make-up on my face because it hurt so much. If I were to have taken a feather and brushed it against the side of my face, the pain would have been intense. It is the most debilitating pain I have ever endured.

I had a balloon compression operation and I've been pain-free for over a year. What a blessing, as the meds were making me very groggy.

My suggestion to you would be to get your Mom in to see a neurologist. They will be able to diagnose better. In my personal opinion, it sounds as if she may have TN.

I hope you and she can find the answers you need in order to help your Mom through this very difficult time.

Kind regards,
Judy

Thanks so much Judy, I was beginning to wonder if anyone would answer me. I didnt want to be a bother. I took her to her MD and told him directly what she is going through. He is getting her seen with Vanderbilt neurology.
Thanks and God Bless everyone who is going through this terrible disease.
Diana

[Jeanc]

The folks at Vanderbilt are wonderful, Diana. Dr. Robert Mericle is a neurosurgeon there and hosted a Trigeminal Neuralgia Association (TNA) regional conference there a couple of years ago. You'll want your mom to see a neurologist first, but be sure it's one who specializes in Trigeminal Neuralgia and/or the cranial nerves. Read through the "sticky threads" at the top of the page (Tips for Newcomers and the Useful Web sites links) to learn about TN. There is also an active Support Group in Nashville - see the TNA Web site http://www.fpa-support.org/ and look under Patient Support for contact information and you can call and they may have names of neurologists who specialize in TN who can better diagnose your mom.

Good luck to you all!

[Bassetcase]

I live here in the Nashville area and yes, I am sure they will be able to make an accurate diagnosis at Vanderbilt, and my bet would be on TN. I saw a neuro there at Vandy by the name of Dr. Riebau. He is very pleasant and thorough, young enough to keep learning, and - I didn't ask the details, but -he apparently has some sort of neurological disorder himself and is in a wheel chair. I was unaware of this until my first visit, but I feel like he may be more focused on learning all the new treatments for our type of disorders.

Luckily, my episodes are very sporadic, so I do not see him on a regular basis.

Good Luck with your Mom - I know it hurts you to see her suffer so.

Best wishes,
Rhonda

[momof3girls]

Dr. Riebau is my moms Dr. when she had her stroke. My mom had an app. with him on the 27th for the TN. But I cant wait that long so decided to go through ER today. She is only getting worse. Now it is constant even in the middle of the night. She is down to 90 lbs and would not even eat or drink for me. AND you can tell she was trying but she cant. TOO much pain.
Thanks Bassetcase!!!
I will keep you updated!!

Originally Posted by Bassetcase

I live here in the Nashville area and yes, I am sure they will be able to make an accurate diagnosis at Vanderbilt, and my bet would be on TN. I saw a neuro there at Vandy by the name of Dr. Riebau. He is very pleasant and thorough, young enough to keep learning, and - I didn't ask the details, but -he apparently has some sort of neurological disorder himself and is in a wheel chair. I was unaware of this until my first visit, but I feel like he may be more focused on learning all the new treatments for our type of disorders.

Luckily, my episodes are very sporadic, so I do not see him on a regular basis.

Good Luck with your Mom - I know it hurts you to see her suffer so.

Best wishes,
Rhonda

[momof3girls]

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.

Originally Posted by momof3girls

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

[Bassetcase]

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

[JudyM]

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

Originally Posted by momof3girls

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.

[Nik-key]

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