single mom.... I believe I can offer some good insight for you...

I have been dx'd with Atypical Trigeminal Neuralgia following dental work.

However, the majority of my pain is in my ear.

This is something that my neuro doesn't seem to understand, so at times, I'm afraid to discuss it too much.

Yet, ironically, when I communicate with others with ATN, bad ear pain is often mentioned.

I went to an ENT and he thought I had some dental or bite problem. It really bothered me. I went back to him later, when I had some weird pain on the same side in my nostril and he did a CT scan. After the scan and nothing was found, he said it was probably ATN and it had spread into my nostril.

If you look at a photo of the Trigeminal nerve and the related branches it goes from the jaw, ear, up into the face, nostril and even around the eye area. It's as if it has "fingers."

Anyway, my neuro, who is very knowledgeable, doesn't seem to know about Geniculate Neuralgia much. I don't think it is seen much.

BUT, I'm on a compounded cream with Gabapentin, Capsaicin and Lidocaine and it has helped me tremendously....I still have triggers and issues...but they are much better. I rub it around my ear, on the side of my face and a little into my jaw area where the dental work was done.

***Go to www.livingwithtn.org. There they discuss all of this, BUT they also have a separate area for Geniculate Neuralgia!
My MRI never showed anything, and the neuro even looked for what would be indicative of GN, but the MRI was all clear.

Wishing you well...I know it is very hard.

**

but just an update...i have had no progress...i saw a pain managment dr and he basically said he couldnt help. I am hopefully meeting with the neuroseurgon tomorrow...something happened with the insurance and i might not be seen. I have been online all day today trying to find help and i have pretty much come up with nothing. I have also looked up every possible thing that could cause ear pain and nothing fits. my symptoms are just crystal clear specific ...hopefully this dr will be of some help. I dont really have a primary dr either pain meds for me of any sort is just not an option.

Any of these types of illnesses require a careful and sometimes long process of being followed by a doctor who will observe, listen to and record your symptoms.
And of course, it is hard, if not impossible, to,get good treatment without the proper diagnosis. You might have regular TRigeminal Neuralgia, as many people with TN, also have ear pain. GN, sounds like a possibility too. It is important that you try to get your insurance situation straightened out. Usually, the meds are started on a low dosage and worked upward. Also, a med like Elavil might be a good choice to add to the Gabapentin. Many people with these health problems get some relief from it and it is also an antidepressant.

Does heat, like from a heating bad help you at all? Is your ear fine and then suddenly you have bad pain?

The surgeries for TN or GN are major surgeries. No way would any doctor even discuss this without first getting a handle on your dx, testing and trying various medications. You might need another MRI.

Again, getting your health insurance straightened out is very important.

Consider contacting the Facial Pain Association inGainesville, Florida for some more ideas.

If you haven't done so already, please check out the website www.livingwithtn.org

I have been diagnosed with Geniculate Neuralgia in my left ear. Also, I have Trigeminal Neuropathy of the 2nd and 3rd branches of the Trigeminal Nerve. In both my ear and face, my pain is constant. I take 120mg of OxyContin and 2400mg of Gabapentin per day, and utilize Lidocaine patches for my face. I've had this for 8 years.

I would encourage you to view Dr. Michael Horowitz MVD for Gen. N. on YouTube. When I wanted more information, I emailed him, and he emailed, then eventually we spoke over the phone.

I wish you the best!

Welcome Laluloh.

It's been over a year since your last post. I'm praying you get this or at the very least I'd like to thank you for your post. It took me three tries to read it because the tears were rolling so thick I had to keep putting my phone down.

Your story was like reading my own shortened version. Mine took well over ten years long excrutiatingly painful misdiagnosing ENT's MRI's CT's neurologists neurosurgeons;AAAGH, there are no words to describe the physical and emotional pain I was in.

Two years ago I finally had a craniotomy for a vascular decompression to treat trigeminal neuralgia. When the neurosurgeon got in there he found that the blood vessel was not close enough to the trigeminal nerve to be the problem. He found an acoustic neuroma; a nerve tissue tumor wrapped around the ear's nerve. I've never felt so much RELEIF in my life.

When I woke up the electric ice pick in my ear was gone. As well was the tinnitus; phones ringing, cars honking, church bells ringing, police, ambulance, fire truck's sirens, bees all gone. Amazing!

At that time my dr thought I had a rare form of neurofibromatosis, schwanomatosis. However, the pain and tinnitus have in the past three months slowly begun to return. I now have pain and swelling behind my eye and my vision gets blurry as well my balance is off. Every step I take is deliberate. So now gn is a possibility. My dr has ordered over an hour of pictures with and without contrast, hoping he'll see wether or not we can exclude this or dx positively.

The more I and my family read about DN the more we believe. I'm a single mother with a twelve year old daughter who's never seen her mother healthy and strong. She's my rock and grace, a true gift from God. I've had to teach her how to cook on good days, so I can rely on her for the bad days. Bad days are really, really bad. I just cried when I read about you and your children. I truly appreciate what you're going through.

I'm praying for you Singlemom that over the last year you've been helped more and you and your babies are thriving.

I also wanted you to know that I personally was quick to anger and also gained a lot of weight on gabapentin. I was switched to pregabalin(lyrica), zonisamide and tegertol. It seems a mix of medications help with the pain more than just one alone. No kind of opiates help me at all and I refuse to be completely out of it because I have a beautiful daughter to raise and they don't help with my pain anyway. They are mostly inaffective on nerve tissue. I take nortriptalyne and bendryl to help me sleep at night. They don't help sometimes, much of the time they do though. I hope you have found some relief. I'm looking for some myself and hope to read more about things that might help here. I'm so grateful for this place and I'm so very relieved to know I'm not alone.

Ive been blessed with the chance to read this, thank you for sharing.