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Old 02-08-2008, 08:57 PM   #1
slskckjebw
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I have had trouble with facial pain off and on over the past several years. It runs from my jaw up into my cheek, just in front of my ear, and to my temple. When it is bad it goes around behind my ear and I can feel pain down into my neck.

My PCP feels it is probably TN because it was over the top painful. Vicoden didn't touch it. The first time I had it it would rip through my face,ear,and into my temple area. It went on for two days before it started to let up.

After that my face was sore and my muscles on that side ached. My doctor wanted to put me on an anti sezuire medication just to see if it helped. I didn't want to go on it because I knew one of the side effects was being tired. I have 5 small children!!

I did have a second round of TN about 18 months later. I have not had any more than two major TN episodes.

But I do have on going deep knife like pain in my ear at times. No ear infection though. Today I am having some pain in the same area the TN hit.

Anyway, I also have ON right now. I thought I read that TN that comes with MS is not as constant as TN that is the primary dx.

My mother and my sister both have a primary dx of TN and are both on daily meds to control it.

Anyone have any thoughts on this? I am wondering since my TN is not as consistant if it could be more of a possible MS thing?

I am not dx'd with Ms but am being sent to an MS clinic by my PCP because he suspects it. Hope this made some sense.

L
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Old 02-08-2008, 11:58 PM   #2
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Old 02-09-2008, 07:43 AM   #3
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I'm guessing the med the doc gave you was neurontin? You may want to rethink trying that. *** and ADs like elavil are the only thing that usually touch nerve pain.

The side effects may not effect you, and may not be bad enough to bother you. Never know unless you try. A lot of others report good results with neurontin. I did fine with elavil. Did okay with lyrica, but it made me feel too *under the influence* to drive, didn't like that. Plus it stopped helping my pain so I stopped taking it.

I have pain like yours at times (it has not been dx'd as TN though, but then, I don't think I ever mentioned it to my neuro) but I get similar pain in other areas, so who knows? I get it in my arms from a spinal disorder.

People who have mentioned TN, I have not seen them say they have it in the ear. Let's see what responses you get. Hopefully they can help.
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Old 02-09-2008, 09:27 AM   #4
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I thought (assumed) I had TN too (because of my great internet researching skills, combined with having MS ), but it turned out to be TMJ:

http://www.entnet.org/healthinfo/topics/tmj.cfm

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Old 02-09-2008, 10:48 AM   #5
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Quote:
Originally Posted by braingonebad View Post
People who have mentioned TN, I have not seen them say they have it in the ear. Let's see what responses you get. Hopefully they can help.
I get the "ice-pick" thing in my right ear.

very sharp, sudden stabbing pain that makes me gasp aloud, and grip the chair arms until it lessens.

maybe lasts a minute, and the fading lasts another 10 minutes.

it comes in waves, sometimes a dozen "stabs" in a span of three hours.

last flare involving TN was last summer, lasted about 3 weeks.

have had maybe 15 or so isolated "stabs" since that time... possibly "pseudo-exacerbations" (I dunno, MS can be tough to figure out)

I'd say 85% occurs in my right ear, 10% in my right cheekbone and right temple, and 5% in my LEFT ear.

doc called it bilateral MS-associated trigeminal neuralgia


hope that helped.
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Old 02-09-2008, 11:11 AM   #6
slskckjebw
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Yes, you did help. And that is exactly what I am talking about!! Same for me. It feels like torture!! it is enough to make you drop to your knees and say I GIVE UP!!

I know for sure ear pain is part of TN because my mom and my sister both have TN not associated with MS or anything else. It is called primary TN. My mom is especially affected by ear pain.

Her TN and mine seem to run in a simular path. My sisters TN is located in the upper branch of the nerve pathway. Mine is in the lower pathway.

I have had my teeth checked out. Checked for TMJ, a bad tooth, ear infection.....nothing. I've had MRI's and there is nothing there that would be causing pain in the Trigeminal nerve area.

I have optic neuritis for the second time in less than 9 months and will be going to an MS clinic on Wednesday. So, maybe I will get an answer soon, who knows. I know some people have Ms for sure, but do not have ON, some do not have TN,,,, I have both ON and TN, and now even some double vision,,,,, but not enough evidence on my brain MRI to get a diagnosis so far. But I have not been to an MS specialist yet. So that is where I am going this week. Which means more doctor visits and tests.

LA

Quote:
Originally Posted by CayoKay View Post
I get the "ice-pick" thing in my right ear.

very sharp, sudden stabbing pain that makes me gasp aloud, and grip the chair arms until it lessens.

maybe lasts a minute, and the fading lasts another 10 minutes.

it comes in waves, sometimes a dozen "stabs" in a span of three hours.

last flare involving TN was last summer, lasted about 3 weeks.

have had maybe 15 or so isolated "stabs" since that time... possibly "pseudo-exacerbations" (I dunno, MS can be tough to figure out)

I'd say 85% occurs in my right ear, 10% in my right cheekbone and right temple, and 5% in my LEFT ear.

doc called it bilateral MS-associated trigeminal neuralgia


hope that helped.
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Old 02-09-2008, 12:12 PM   #7
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Quote:
Originally Posted by CayoKay View Post
doc called it bilateral MS-associated trigeminal neuralgia.
Interesting!

LA, hope you get some answers next week!
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Old 02-09-2008, 05:42 PM   #8
slskckjebw
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Quote:
Originally Posted by Bearygood View Post
Interesting!

LA, hope you get some answers next week!
That is interesting and has to be so painful. Mine is a low roar right now. I hope it stays that way. I think I may have to call my PCP on Monday though. I want to make sure I can make that 6 hour drive to and back from the MS clinic on Wednesday.

My husband is taking me but even if someone else is driving full blowen TN is incapasitating and I want to make sure I get some medication before I go if I need it.

LA
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