March 2013 I went to an urgent care after hours after I could no longer stand the deep, constant, dull pain deep in my ear. I was diagnosed with an ear infection and put on 2 weeks of antibiotics (I am highly allergic to almost all antibiotics, so this was very disturbing to me). When the pain did not get any better after the 2 weeks of antibiotics, I went back to the same urgent care doctor. I was told I still had an ear infection…took 2 more weeks of antibiotics and now steroids. After the pain did not go away, I went to my PCP. He also diagnosed me with an ear infection. The next day (March 2013) I went to an ENT who said I never had an infection, it was diagnosed as TMJ.
Fast forward to 8/2014. Pain is unbearable and I can’t take it anymore. Made an appt. with an Oral Surgeon to look into TMJ further to try and stop the ear pain. I had an MRI and the oral surgeon recommended surgery. I HAD SURGERY on my jaw on 8/19/2014. THE PAIN IS WORSE! The pain went from a dull, deep, near constant pain to a sharp, stabbing (like a fork is deep in my ear), sometimes burning, sometimes pain radiates to my jaw (I am still recovering from surgery). I have now been referred to another ENT that specializes in the nerves of the ear, but can’t get in until 9/26/2014.
The pain was so incredibly bad that I walked into my PCP (a new one, since the last misdiagnosed ear infection) last Friday and begged for help. She put me on prednisone, neurotin, and Rx pain pills. I have since weaned off the pred, am taking 600 mg neurotin/day and trying my best not to have to take the pain pills (I have to drive and can’t take them until I am back home).
I am trying to determine if I am suffering from ATN. I don’t fit the same symptoms as TN, but some on ATN seem spot on. I do not have migraines, just jabbing, horrible pain in my ear…deep in my head. Has anyone else had these symptoms and been diagnosed with ATN? I would like to do research and try to find the right doctor to rule it in or out, so I do not have to keep bouncing between specialist and have SURGERY and still NO relief! Help, please, if this sounds familiar. Thank you in advance!
OH MY GOSH! Someone on here mentioned I may have Geniculate Ganglionitis. I THINK THAT IS EXACTLY WHAT I HAVE!! I can’t believe I joined this forum an hour ago and I think I am really onto something! There isn’t much info on GN, but I will be digging further. Those are my symptoms exactly! Wow, 1.5 years of going to 5 doctors, one surgery, and waiting to see another specialist…and I have an answer in less than an hour. AMAZING! I REALLY think this is what I have. If anyone has any insight or information to share with me, I would be most appreciative!
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Geniculate neuralgia
Also see a neurologist … Look at our doctors tab!
Even if you have to drive further…find a TN neuro!
I am so glad that you found what you were looking for! The correct diagnosis is half of the battle! It amazes me how many people with these types of conditions actually diagnose themselves! Good luck moving forward to a pain free life!
I went to see a neurosurgeon yesterday (Dr. Patel at MUSC in Charleston, SC is not on the list, but very knowledgeable in TN, ATN, and GN). He diagnosed me with GN and I have a MRI scheduled in a week with and without contrast of my brain followed by an appt. with the neurosurgeon. I still can't believe I was able to diagnose myself because of this forum!!!
I also went to a ENT out of MUSC that specializes in nerves yesterday (yesterday was a busy day) and as I expected, he did a thorough examination including a hearing test and a camera up my nose. My ears, hearing, nasal cavities, throat, vocal chords, etc are all healthy.
I feel so relieved to have a diagnosis, even though at nearly 38, it isn't the greatest diagnosis. I am hoping for the best results when I get the MRI back. I am also using essential oils to help with pain. I am now a distributor and strong believer in them, since this pain began. I never would have tried or thought they could work, but they do. I still have to take medications, but since I started the essential oils, I do not have to take as much pain meds and can get through my day without taking them, so I can work and drive. If you are interested in learning more about essential oils, just ask me. I'm not making a business out of it, just became a distributor so I would have access to the oils and can help my friends and family get them. They are Young Living essential oils and are the highest grade and the hardest to get. If you know of any good essential oil recipes that work for you, please share them with me. I'm just learning and would love any information.
Best to luck to all of us. I'm still in disbelief that I figured this out by joining this group!!! So amazing to me! Thank you all for your input and advice!!! XOXOXO
Thanks,
Danielle