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Atypical Trigeminal Nerve Pain

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Unread 05-05-2010, 12:14 PM   #1
mlittlem
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Default Atypical Trigeminal Nerve Pain

This is my first post on this message board so I'll do my best.

Has anyone been diagnosed with atypical neuralgia / tigeminal nerve pain? My symptoms don't fit the classical ones. I have constant and unrelenting pain mainly in my eyes and forehead area. The pain is not the sharp and shooting type that I have read about with TN. Rather it is a dull, aching, throbbing, burning sensation. The other thing is that it is not on one side of my face but both.

I have not been formally diagnosed. I seem to have the doctors stumped. This is what my neurologist thinks but it is not a formal diagnosis.
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Unread 05-06-2010, 10:04 AM   #2
Bassetcase
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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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Unread 05-06-2010, 12:20 PM   #3
mlittlem
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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.

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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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Unread 05-07-2010, 09:56 AM   #4
Bassetcase
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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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Unread 05-11-2010, 07:18 PM   #5
leejcaroll
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yes. I was many, many years ago (in 1977)
I had the lightning pains that were triggered and spontaneous as well as constant pain, and eye usage and movement pain.
A few years back i was at a regiional meeting fo the trigeminal neuralgia assoc. One of the neuros there spoke about the changes in diagnosis and diagnostic criteria and that they ow consider facial paiin, inclusing tic as being on a continuum. In fact you may have noticed the trigeminal neuralgia association is now calliing itself the facial pain association.
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Unread 05-30-2010, 02:39 PM   #6
shaughnna
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Default Eye pain

Quote:
Originally Posted by mlittlem View Post
This is my first post on this message board so I'll do my best.

Has anyone been diagnosed with atypical neuralgia / tigeminal nerve pain? My symptoms don't fit the classical ones. I have constant and unrelenting pain mainly in my eyes and forehead area. The pain is not the sharp and shooting type that I have read about with TN. Rather it is a dull, aching, throbbing, burning sensation. The other thing is that it is not on one side of my face but both.

I have not been formally diagnosed. I seem to have the doctors stumped. This is what my neurologist thinks but it is not a formal diagnosis.
Hi:

I also have atypical neuralgia. I have constant and unrelenting pain mostly in my right eye, but sometimes also in my left eye. I also have bouts (about 4 or 5 a day) of pain in my upper gums. This all started after having gum graft surgery in the same area. I could live with the gum pain, but the eye pain is excruciating. The side effects from the drugs that they have treated me with are barbaric. I am hoping to do some research (when I have a period of time when I feel up to it) about some alternative treatments. I am willing to try just about anything. This has been constant for over 2 years now. If anyone else have the same and has any suggestions, please send them my way.

Thanks

Shaugnna
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Unread 05-31-2010, 09:36 AM   #7
leejcaroll
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Yes, both.
As you may have read in an earlier post the doctors now believe there is a continuum along which trigeminal neuralgia and atypical facial pain fall.
It is possible to have bilateral trigeminal neuralgia so unfortunately you could have it, if that is dx, on both sides.
Tegretol used to be, I believe it still is but am not sure and I am not a medical person, the first drug tried. If it worked it was considered diagnostic for Tn, but if it didnt it did not rule it out.
There are many drugs and treatments now available to treat tn so you can have hope that if it is tn and one drug or treatment does not work, there are many others to try.
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Unread 06-28-2010, 11:44 PM   #8
Pete_Ike
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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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Unread 03-22-2013, 02:32 AM   #9
SkyeHawk
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Unhappy Pain

Quote:
Originally Posted by mlittlem View Post
This is my first post on this message board so I'll do my best.

Has anyone been diagnosed with atypical neuralgia / tigeminal nerve pain? My symptoms don't fit the classical ones. I have constant and unrelenting pain mainly in my eyes and forehead area. The pain is not the sharp and shooting type that I have read about with TN. Rather it is a dull, aching, throbbing, burning sensation. The other thing is that it is not on one side of my face but both.

I have not been formally diagnosed. I seem to have the doctors stumped. This is what my neurologist thinks but it is not a formal diagnosis.
My pain can last hours to days on end.The pain so severe I had to take an army of meds to get rid of it.Turnd out I had ATYPICAL TN also found out I have Occipital Neuralgia. Those to nerves are of a group of 12 cranial Nerves.Sounds to me like you also have both nerves either damaged or having a vien or blood vessel putting pressure on those nerves.
A Typical TN is a huge nerveand can make you feel like you just got wacked in the face by a baseball bat.And the occipital makes it worse.They call the TN "The suicide disease.I have had it now for over 25 years.What I hate most is being single and no one here to tell me it will be alright.And just hold me. SkyeHawk .
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Unread 03-22-2013, 11:49 PM   #10
Vowel Lady
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I have been dx'd with ATN. It started after dental work.
I always have discomfort, but previous to my treatment and meds...I was in constant pain and sometimes horrendous, over the top pain...much like what others have said. I still have some bad days and have to take Percocet..but am doing much better overall.

My treatment is this:
I take Despipramine daily. It is a tablet, much like Elavil.
I have a compounded cream that is made up of Gabapentin, Lidocaine and Capsaicin. I put this on the affected side of my face four times a day.
I also go to acupuncture two to three times a week.
I take Percocet for breakthrough pain, but do not have to take it as often as before.

Still very difficult, but not as terrifying as it was originally. It has been horribly frightening and challenging. Life altering. My medication, etc. has helped. It is noticeably better now.

It is something to talk with your doctor about because I have heard from others with ATN that this routine has helped many, although some people take the Gabapentin orally.

There are also neuro stimulators that can be implanted into the face...something I have considered and hope I won't need to do.

Wishing you well.
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