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Old 05-06-2010, 10:04 AM #1
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Bassetcase Bassetcase is offline
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Default Sounds familiar ......

Hi there, sorry to have to meet like this, but yes I too have been diagnosed with the Atypical TN. My pain is like you say constant, throbbing, burning, boring sensation - but centered in my right ear and the immediate area surrounding it. Oh, and along with the constant pain are the intermittent ice picks to the ear. Turning my head to the left, talking, and OMG smiling is excrutiating. Thankfully, my episodes are very sporadic usually at least once a month for 4-8 hrs at a time and sometimes several days in a row and then may not have another for 3 months. No triggers are apparent for when it flares up. I take the extended release tegretol (brand name Carbatrol) but only when I have an episode. Heat applied to my ear with the meds usually soothes somewhat until the episode is over.

I was diagnosed with inner ear problems for about 3 years before it was ruled out with several head scans by three doctors.

Sorry you are hurting, hope this helps a little.

Good Luck,
Rhonda
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Old 05-06-2010, 12:20 PM #2
mlittlem mlittlem is offline
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I wanted to ask how you are differentiating the pain. Although you say that it is constant, you also say that there are episodes. How are you defining an episode and how is it different from the throbbing, burning, etc.??

Thanks for clarifying.

Quote:
Originally Posted by Bassetcase View Post
Hi there, sorry to have to meet like this, but yes I too have been diagnosed with the Atypical TN. My pain is like you say constant, throbbing, burning, boring sensation - but centered in my right ear and the immediate area surrounding it. Oh, and along with the constant pain are the intermittent ice picks to the ear. Turning my head to the left, talking, and OMG smiling is excrutiating. Thankfully, my episodes are very sporadic usually at least once a month for 4-8 hrs at a time and sometimes several days in a row and then may not have another for 3 months. No triggers are apparent for when it flares up. I take the extended release tegretol (brand name Carbatrol) but only when I have an episode. Heat applied to my ear with the meds usually soothes somewhat until the episode is over.

I was diagnosed with inner ear problems for about 3 years before it was ruled out with several head scans by three doctors.

Sorry you are hurting, hope this helps a little.

Good Luck,
Rhonda
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Old 05-07-2010, 09:56 AM #3
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Default Episodes

Sorry to confuse - the pain description is always the same. When I have an attack the pain is constant. The "episodes" are what I refer to the attacks. My pain is not on a daily basis. I sometimes go for 2 -3 months without pain, then suddenly for no apparent reason I'm hit with it again. Each episode lasts 4 - 8 hrs. and sometimes repeats itself several days in a row.

I hope this makes sense. Feel free to ask if you want to know more.

Hope you get relief soon.

Rhonda
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Old 06-28-2010, 11:44 PM #4
Pete_Ike Pete_Ike is offline
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Ive been tracking my TN for 2 years now but only had 1 MRI and blood tests. Its nice to find this thread, since most are for people suffering far worse and different symptoms than myself. Mine started on right side of forehead and has since changed a bit each time I have episodes. Anywhere from my right eye, to my upper cheeks, to eye twitching and the worst of all the sharp deep throbbing pains. My symptoms and Neuro say its TN but I constantly have this doubt that I wasnt diagnosed properly, and I dont feel like talking about it anymore, since Im so all over the place with my pain issues. ive always found that the change of seasons is my worst time, and this summer has been bad. The last 4 weeks it started with eye twitching under my left eye, over to top of left eye by the nose, down to both sides of my nose, to now deep sharp head pains. Pain meds do nothing for the deep sharp pains. Im stressed out and I think its because Im obsessing on my health issues, not sleeping well now. Anyone else go through anything similar? Maybe I should talk to Neuro or my normal Dr but dont feel like they can do anything. Based on my original pain, it seems like I have atypical TN since I dont have jaw issues. Thanks for any replies
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Old 05-14-2013, 04:05 PM #5
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Quote:
Originally Posted by Bassetcase View Post
Hi there, sorry to have to meet like this, but yes I too have been diagnosed with the Atypical TN. My pain is like you say constant, throbbing, burning, boring sensation - but centered in my right ear and the immediate area surrounding it.

Good Luck,
Rhonda
Greetings,

I know that this quote above is a bit dated but the situation described is similar to what my wife is experiencing.

In reading the suggestions in other places, we have started a pain and med chart in order to record the episodes.

Thanks for all of the posts and for this forum.

Heyjude
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Old 05-17-2013, 11:10 AM #6
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I am wondering how other ATN has progressed. I was just having the pain in my upper jaw but have started having shorter episodes in the lower jaw on the same side. My pain has increased as well during this time and I had to increase my Tegretol.

Have other had it progress to more than one branch over time?
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