Geniculate
 

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. :Tip-Hat:

I feel your pain...exactly!!!
 

:hug::hug::hug: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.