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Trigeminal Neuralgia Message Board
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Old 04-06-2008, 06:40 AM   #1
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intercoastal neuralgia

Anyone here have any experience wit intercoastal neuralgia. My 15 YO has had severe stomach pains for 2 months. So far Xray, CT scan and endoscopy and colonosocopy all normal, except for Barrett's esophagus, which is an issue, but would not be causing this pain.

She has not been in school for 2 months. Dr's now all say it is anxiety. She wakes up with this and goes to bed with this.

She read on line about intercoastal neuralgia. I only see a few articles.

If anyone has any information or personal experience I would love to hear from them.

Thanks

 
Old 04-06-2008, 08:01 AM   #2
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Re: intercoastal neuralgia

My best friend's daughter was in and out of the ER maybe a dozen times with severe stomach pain and they could never find anything...until finally they went to a hospital specifically for children. There, they met a pediatric gastroenterologist (sp?) who figured out, after a lot of tests, that the kid had something called abdominal migraines. They treated it with low dosages of Elavil (amitryptiline) and she got a lot better. She still has a very sensitive stomach but I think those episodes ended up stopping. Not the same as your diagnosis, but you never know...

 
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Old 04-06-2008, 08:24 AM   #3
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Re: intercoastal neuralgia

Thank you. I looked this up briefly and it seems that these migrains also have other symptoms like nausea, which she does not have, and come and go. Her symptoms never go away. I will mention it to the pediatric gastro however just in case.

Also elavil is a tricyclic antidepressant, so its interesting she was given that

Last edited by Sillyme03; 04-06-2008 at 08:48 AM.

 
Old 04-06-2008, 08:49 AM   #4
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Re: intercoastal neuralgia

I don't know if there was any nausea involved in her daughter's case; I will ask her for you and find out. We all thought it was a pretty bizzarre diagnosis and we found out years later that the girl was also lactose-intolerant. I'm pretty sure that didn't have anything to do with it, but even as an adult, she has a sensitive stomach sometimes.

Good luck with the treatment, and I'll see what else I can find out for you.

TM

FYI, Elavil is often used for off-the-label treatments, especially migraine type conditions, so I assume that's why it was given to her.

Last edited by TexMom85; 04-06-2008 at 08:50 AM. Reason: PS on Elavil

 
Old 04-06-2008, 10:47 AM   #5
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Re: intercoastal neuralgia

It would be great if you could find out, also how old was she?

Thanks

 
Old 04-07-2008, 01:29 AM   #6
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Re: intercoastal neuralgia

Quote:
Originally Posted by Sillyme03 View Post
Also elavil is a tricyclic antidepressant, so its interesting she was given that
Elavil(amitryptiline) and Pamelor(nortryptiline) are used for a wide variety of "nerve" pain conditions and neuralgia is definitely nerve pain related. These are actually one of the first lines of treatment for nerve pain although they are usually given at night because they are helpful for sleeping.

brian

 
Old 04-07-2008, 09:02 AM   #7
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Re: intercoastal neuralgia

Now I am going to throw a completely different idea out there -- could her problems be female related? Endometrosis can cause alot of intestional/stomach/bladder problems and is very painful. Just an idea.

Last edited by ms_west; 04-07-2008 at 09:05 AM.

 
Old 04-07-2008, 09:36 AM   #8
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Re: intercoastal neuralgia

I will ask about that. I don't know if it can cause 24 hour a day pain, but you never know. Her pain is further up, under her ribs mostly, rather than further down

Thanks

Last edited by Sillyme03; 04-07-2008 at 09:38 AM.

 
Old 04-07-2008, 11:07 AM   #9
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Re: intercoastal neuralgia

My friend's daughter was 10 at the time of her diagnosis. She had been to the ER many times for several years prior to finally getting a pediatric specialist who made this diagnosis. She had MRI's, upper and lower GI's, you name it, they ran the test. Poor kid had her arm *****ed so many times, she now has extreme fear of hospitals.

Her pain was in the general stomach region, not too low. They often suspected appendicitis, but her blood count never showed an infection and she did not run a fever. They treated her with the low dose of Elavil for about two years, and it worked fairly well. She still has a sensitive stomach as far as eating certain things, but to my knowledge she has not had a severe flare-up in quite some time.

I do remember thinking, where in the heck did they come up with this ailment? But the treatment helped her and she was never back in the hospital for stomach pain after that.

Hope this is helpful!

TexMom

 
Old 04-07-2008, 11:33 AM   #10
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Re: intercoastal neuralgia

Thanks so much, I will mention it to Dr. One last question. Did she have the pain constantly non stop all day or did it come and go?

Thank you so so much

 
Old 04-07-2008, 11:52 AM   #11
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Re: intercoastal neuralgia

Silly,

Her attacks came and went, but when one came, her pain was fairly constant, if that makes any sense. So, she would go days without pain, then have an attack that would last for hours and hours.

Hope that helps!

TM

 
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