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Old 03-22-2013, 02:32 AM #1
SkyeHawk SkyeHawk is offline
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Unhappy Pain

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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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Old 03-22-2013, 11:49 PM #2
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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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Old 05-19-2013, 04:25 PM #3
TN-GK What Now? TN-GK What Now? is offline
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Cool Facial pain!

I don't know if laughing hurts...I hope not but I thought this might cheer you up! Had I been DXd with TN when I was married to my ex husband and said my face hurt, he would have said, "It's been killing me for years".
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Old 07-22-2013, 05:46 PM #4
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what medication do you take and at what dose? im on tegretol 100mg, i take 3 in the morning, 2 at lunch and 2 in the evening, 700mgs and its not helping
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Old 03-26-2013, 02:50 PM #5
Deyereth Deyereth is offline
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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.
mlittlem, I have exactly the symptoms as you described. I have not seen a neurologist yet but I have an appointment. My pain has completely destroyed my sleep routine and since I have them, i feel constantly exhausted. If you have any news on treatment, please send me a PM, I would greatly apreciate it.
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Old 04-23-2013, 01:16 PM #6
Snailz Snailz is offline
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I've been to my doctor today and she thinks that I have atypical TN Mine is also in my Eye, The left eye at the top, It has been there for about a month now and has been constant, Iv never had a break, sometimes it spreads out to my eye brow, cheek and bridge of nose but always behind the left eye
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