Good morning all - I hope everyone is well.
Before I start my story here I’ll let you know all the symptoms I’m dealing with as of June ‘25:
Crazy ear pressure that is relieved for a split second when I jerk my jaw around. The relief is more pronounced when I simultaneously move the jaw and pull my fingers downward on the area right below/behind my ear lobe (where I now know the styloid is). My voice is extremely sensitive and will fatigue/rasp up with limited use. It’s extremely hard for my friends to hear my in a noisy bar, which furthers the issues as I have to scream for them to hear me. I feel pressure build up whenever I swallow, and the area behind my ear/lobe is very often swollen/tender. All of these issues are always flared up at the same time so I know they are at least somehow related. It’ll also worsen when I smoke weed or even eat a THC gummy. I also have a lot of issues that, through research over the past year or so, seem to be related to vagus nerve issues. I had a bit of an ‘Ah Ha’ moment when I saw that the vagus nerve can be compressed with Eagle. These issues include fatigue, swallowing/motility issues, brain foginess, newfound concentration issues, and even issues with gripping stuff. Like I feel like I’ve gotten super clumsy over the past few yrs. I should also mention that I highly suspect that I have EDS though haven’t been able to get with a geneticist to confirm. Lastly, I can move my neck bone (hyphoid?) easily. Not sure if that relates to anything. Also, I’ve had 24/7 globus feelings since 2023 and, while it’s not constant, I regularly feel like I am choking from the inside. The symptoms certainly fluctuate in severity and seem to be worse when going thru stress.
Further Detail:
I am a 30yr old Male, very active with lifting weights and running several times a week. Ive has been dealing with a wide number of unusual symptoms for quite some time now. Looking back, the symptoms go all the way back to 2013, but they’ve been more pronounced and with many additional symptoms for the past 2yrs or so.
I vividly remember the first symptoms. It was the middle of our ‘Hell Week’ during our pledging semester for our fraternity back in 2013. I remember waking up on the floor of our gross fraternity basement , feeling cracking in my right ear for the first time, and that cracking has not gone away since. After the ENT saw nothing wrong in my ear, I remember telling my mom that I wanted to hire a team of doctors one day so they could calibrate and figure out what was wrong with me. Even then, I knew something was up.
Fast forward to the beginning of 2023. The ear cracking/fullness had gotten much worse, and while the right side is worse, the left is pretty bad now too. For the first time, I felt a strange sensation of pressure building up and being blocked in my throat/back of nose that would happen when I swallowed. Since then, I had slowly started noticing that my voice was weakening to the point where it would even be more challenging to just speak. I work a fast paced job in the finance world where I am on the phone all day, so this began to be a big issue as time went on. I also am a singer in a band, which has obviously been impacted greatly.
I’ll notice that my symptoms are always much worse following a heavy band practice with a lot of singing. My ears, throat, and sides of neck will tense up and my hearing becomes a bit muffled. It’s also much worse in the mornings.
I’ve been in the habit of gripping with my fingers the area where I now know the styloid to be to relieve pressure behind my ears. I’ve been doing this for years before even knowing about styloid stuff. While in bad flare ups, I remember being able to feel something in that area that was hard and sore (which again, I now know to likely be the styloid)
I’ve gone to several doctors to figure out what’s going on, mostly ENT and GI professionals in the recent months, but also rheumatologist in the beginning. I tried PPIs, and other silent reflux (LPR) treatments, but nothing really worked and my symptoms were not clearly associated with diet or any of the other typical reflux things. My GI had me do a 24hr PH level test (horrible experience) and a swallowing test. He said there was really no “smoking gun” with the PH test, but that I did seem to have weakened swallowing abilities.
I really think something else is going on outside of traditional ailments.
I feel like there is more to share in terms of symptoms that I am not thinking of, but wanted to run this by the group to see if it resonates at all with your experience.
I am actually praying that I DO have Eagle because it would finally give me something concrete to point to that is responsible for these symptoms I’ve been dealing with. I am a bit scared at the thought of surgery because of permanent nerve damage (especially if mine involves the vagus nerve). But at the same time would probably risk it at the chance of relieving these symptoms.
I am in DC, and surprisingly there are not many people here who work with this condition but I am trying to get imagining done ASAP.
Let me know yalls thoughts. Thanks all!
I have other issues with ear pain inside my ear and outside in the muscles where the styloids are located. Mine are 3.2 and I do not understand why they can cause so many issues.
