Hello, introducing myself

Hello everyone. I just wanted to say hello and introduce myself. I’m also a member of the eagle’s forum too. After seeing two ent surgeons last week they both declined surgery as an option. The second doctor was much more thorough but also insisted my pain is not from eagles but is classic “textbook” TN and to tell my neurologist I see for the first time on Thursday thats what he said.
I’m just trying to sort everything out and gather as much information as I can because I’m so used to the brush off from doctors and this is affecting every moment of my life at this point.

  • I definitely agree I am experiencing occipital neuralgia. This one is clear.
  • I dont necessarily disagree about TN, its more I dont agree the styloids from Eagles isnt contributing
  • the push of textbook TN from an ENT made me uneasy. I have dysphagia symptoms, throat pain and discomfort, globus, and my tongue is constantly tingling or burning. My right ear is in pain constantly that ebbs and flows in intensity and my left ear hurts off and on. I have pain in the front of my neck, under my chin, and around my ears that radiates into my jaw and face.
  • the pain he said is TN is the shooting in my face but i was clear its never “electric” or a zap, more like a wave of sharp pain moving across my face. When my “bad headaches” happen (most likely occipital neuralgia pain), it gets worse and I also have pain around my eye or eyebrow. It moves as well through out the day.
  • My pain is almost always right sided. If its on the left side its less often but more intense. I do have cervical spine issues.
  • my concern isnt so much ruling out TN its figuring out the other issues and hopefully a root cause for it all. I know I may not get an answer I just dont want a misdiagnosis either.
    Thanks for reading. I really look forward to being a part of the forum.

I forgot one of my most important symptoms and one that affects me the greatest is 24/7 tinnitus in my right ear. I do have intermittent tinnitus in my left ear. When i lay down on my side I have pulsatile tinnitus. I can increase the ear pain and tinnitus with certain head positions.
Ct scan confirmed my elongated styloids but otherwise was unremarkable. Im still waiting on endoscopy biopsy results but it only confirmed mild gastritis most likely from so many nsaids. Brain/inner ear mri was clear. They did note a deviated septum and i have a DVA i was probably born with (I’m 39, and have known about it since i was 17). Neck MRI shows mild grade 1 retrolisthesis c3-4 and c 5-6. Diagnostic cervical facet joint injections took some of the tension out of the base of my skull for a few hours and my upper R trap was happy for once. Haha.

Hi Katie.
With Glossopharyngeal Neuralgia I also have ear pain and when the Oral pain is about to ramp up often hear a " glub–glub-glub" noise . The ear pain will often respond to a topical Anesthetic The ENT who saw me to rule out Eagle"s suggested EMLA for pain and its been very helpful. I apply it with a Q-tip near the entrance . EMLA is made of .Lidocaine and Prilocaine. Interestingly it was recently added to Mark Cuban"s pharmacy plan where he is trying to help Americans without a drug plan get cheaper meds. I hope this helps.

Sorry you’re experiencing this.

Hope you get some relief.

Thank you! I never would have thought of a topical anesthetic for my ears. I’m going to look into asap. I really appreciate it.

Thanks and I hope you’re doing okay too!

I have learned from doctors they know too little about the relationship between TN and ATN with Eagles. TN pain is electrical shocks if your doctor is using the term TN for non electrical shocks they are confused because it is ATypical trigeminal. I kept detailed journals and was able to isolate what would start my pain attacks. Turning my head to talk, pressure on my shoulders, lifting heavy objects and massage with my head in the face cradle. This gave me the understanding that when the styliod pressed into my trigeminal nerve my pain would spike or increase. I had eye pain, burning in my scalp, ice pic in my ear and very sever teeth pain. Not classic symptoms of eagles but symptoms of ATN but the source was Eagles. My styliod was removed 12 years ago and my symptoms became 90 percent better. My second side began having classic eagles symptoms 3 years later and I was told by two doctors my ES disappeared. Last year I developed tinnitus in only my ES unoperated ES side. I had a 4th ct and had all 4 cts reread by a radiologist who proved I had ES in all 4 cts. I went to the doctor and he agreed my classic symptoms were caused by the styliod, I am 7 months out of surgery and the choking and head turning is better but my tinnitus appears to be permanent. Please try to document when your symptoms of ATN worsen because Eagles could be the source.

Thanks! Its funny the back and forth between the doctors and how they completely contradict each other. My plan right now is to start a really detailed symptom journal like you mentioned you did and to go with the neuro’s suggestion of trying the nortriptyline. And then scheduling with Dr Annino hopefully this summer- I dont know what his availability is like but I want to make sure I have a few weeks at least to show I’m trying these other things including PT so its on the record I tried and none of it helped :slight_smile:

When I was journaling I noticed when I would fly on a plane my pain would spike. Then I looked into why. If I turned my head to talk to my seat mate, lifted a suit case into over head or lifted my suit case I could feel a tightening of my muscles. If I had PT and my neck was manipulated or one time I was put on a roller machine my pain would spike. I needed to look into the activity to see what was causing my issues. Good luck!

Oh geez. Im such a silly human. I take things so literally sometimes :laughing::woman_facepalming: I was thinking she meant like instantly triggering it like how some people cant brush their teeth without pain or cant even handle their hair brush across their cheek??

But yes lots of activity like you mention, pt and massage send me into horrible pain, the ent pressing on the back of my throat to check my styloids sent me into 3 days of torture… crying will do it. Sitting at the computer will do it. When I worked retail and was put on register it would do it. I tried explaining to the first ENT I saw that I cant turn my head for a long time like to talk to someone or watch a movie. I choose where I sit strategically now so I can look dead on or slightly left, never to the right. But its rarely right away. It takes me a few days. Is that still a trigger? I know for migraines it would be but idk for this.

The only time I have had like instant ouch was the styloid thing last week and trying one of those migraine ice hats made the left upper corner of my forehead sear in pain but i just adjusted the hat and all was good.