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 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

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.

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

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

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

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?

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.

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

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.