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May 11, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

That sounds like me. I also have eagles syndrome, but I was also recently diagnosed with psuedo tumor cerebri. Which was the cause for my pressure feeling when I got my headaches. It was also the reason why it seemed the more I moved around the worse it got. The psuedo tumor is also the same reason my heart rate always ran a little high. I was always 110-105 resting. I am down to 95 resting on average now since I was started on diamox. I haven't had a headache since the diamox either. Even with as long as my ES styloids are. I still feel my styloids in there poking, making my ears hurt. I think sometimes when you have the styloids you can have other things wrong and sometimes the symptoms overlap. I don't know a whole lot about the VA, but I do know that it sounds like you aren't being cared for the way you should. I had to go to another state to find answers because no one in my state knew what eagles syndrome even was without having to do a Google search. I wish you the best. Keep looking for answers and never settle for second best!

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

I am so sorry. These headaches are the worst. I have them too. You are not alone. You are not crazy. I think the headaches are a more rare side effect of ES. Is the styloid on your right longer than your left?? Both of mine are long. So I think that's why my entire head gets affected..

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

I live in a different state than my mother and sister. They seem to have better luck there with doctors so I'm taking a trip up in April to see their neuro doctor since the doctors around where I am seem pretty clueless.

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

No, I just recently found out about it from my mom. I think it's a fairly new diagnosis in the family. There's quite a few genetic issues that run in the family in general. I do know that my mom and my sisters styloids are not as long as mine and they are not as symptomatic as I am.

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

Do you get the headaches too??

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

I have always had a high resting heart rate as far as I know. Eagles syndrome is genetic in my family. My mother and sister both have it as well. I'm not entirely sure why I have the headaches. Neuro has attributed them to my ES. I'm assuming they are pressing on something. I'm still in the process of getting things figured out on my end.

Mar 8, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

I have had a headache that's lasted for up to 2 months. It broke for a few days with slightly less pain here and there but it stayed painful for that long. My resting heart rate has always been in the upper 90s sometimes low 100s.

Mar 7, 2019 · Eagle Syndrome in Ear, Nose & Throat (ENT)

I have eagles syndrome as well. I always had a sensation like there was something in my ear. So I would always stick my finger in my ear and wiggle it around or lick the back of my throat (if that makes any sense) to try to make it go away. To no avail obviously. It started to rapidly progress from my early 20s to early 30s though. Hence why I have the diagnosis now. Headaches that would come in bursts lasting anywhere between a week to a month or more at a time coupled with ringing ears, my teeth hurting, my ears hurting, a lump in my throat that never goes away, spears in the back of my neck the base of my head area. Just so much pain. And after days upon days of this of course it radiates and encompasses almost the entire top half of my torso and head at this point. It's maddening. I'm wondering if anyone else gets headaches from these??? These are 3d renderings of CT scans I had. The neurologist I go to right now tells me they can't grow because I'm an adult. And I think she's wrong as hell because mine have progressively gotten worse symptomatically since my early 20s. I'm 32 now. She just keeps throwing pills at my head, worst part is they don't work most of the time anyways. haha. I wish someone would snap these things off so I didnt spend 3/4 of my life in a crippling headache…. I can't even play with my kids half the time. Eagles syndrome is a quality of life ruiner… that's my opinion.