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Eagle Syndrome - Online Support Group

Unusual ear symptom

I am looking for any Eagle Sufferers that have been dealing with hyperacusis (painful sensitivity to noise).
In addition to the tinnitus zoo (crickets,percussion grenade rings, roaring and pulsating, clicking) pressure, nagging pain, electrical shocks from inside out, severe neck pain from mastoid process down, migraines(imitrex is my BFF), yadda yadda…
The hyperacusis pain from noise can leave you breathless with tears. Your whole body is jolted. I can’t talk on the phone, be around people…especially loud children and crying babies. No more high school basketball games with buzzers, whistles from refs or fans clapping. No movie theaters. No bowling alleys. I feed my family on paper plates so I don’t hear silverware against plates. Wear headphones to undo dishwasher. (And yes, the headphones hurt around my ears and earbuds hurt as well) Television at home is captioned and my Bose noise cancelling headphones are my best friend when my family watches Saints Football with the high fives and celebrating…or booing. I used to celebrate with them😔… THE NOISE PREVENTS ANY NORMALITY OF LIFE.
Had bilateral extraoral may 2015, July 2015 SUCCESSFUL.
PAIN Started past eight months or so and CT has confirmed they have grown back. I’m very familiar with all the symptoms EXCEPT for this noise sensitivity. Can’t find the first article.
Getting ready for a second surg. Will do total snip and resection…I forget which ligaments,muscles or nerves the styloid usually connects with. Will have to live without those connections now. It will be worth it though.
Any experiences with this? HYPERACUSIS
How about second surgeries with total snip to the skull base and what muscles, ect will I lose?

I had it, but only mildly, so can only sympathise- it’s sounds awful (pardon the pun). I have seen it mentioned in one of the research papers- have a look if you can in the Newbies Guide ES INfo section about symptoms & what can cause it.
My surgery was done by a skull base surgeon, so mine were taken right back- I don’t know what happened to all the attachments- I kept forgetting to ask- but certainly haven’t noticed any changes to swallowing, talking etc., no difference at all!

Thank you Jules! Skull base snip is what I need and I’m glad to hear about you not noticing the lack of attachments. Sounds like the way to go…PUN INTENDED :joy::joy:

I had hyperacusis approx. 4 years ago, everything was really loud particularly the fridge and generators. I still hear a low frequency sound which sounds like a whirring (this prevents me from getting a good nights sleep), but I can now cope with everyday sounds. Over the last 4 I have had really strange symptoms such as the back of my brain vibrating, sometimes my heart would vibrate, pain on the right side of my head, I would also feel as if there was pressure on my head and body. There are wind turbines near to where I live and I did wonder if they were causing my problems, but as I have now been diagnosed with Eagle Syndrome I am not sure.

Sounds familiar. That “brain vibration” sounds akin to a type of tinnitus sound. It’s like when you yawn and there is a kind of a roar, for lack of better description…but it’s non stop and annoying. Having a fan on low near my head helps outside noises from waking me (ambien im sure helps😴)

Hi Candy-mac!
I also have periodic hyperacusis. I acquired Meniere’s Disease in my left ear between my ES surgeries. Intermittently, I have to wear an earplug in that ear in order to function normally. I sleep w/ earplugs in at night but I do have constant tinnitus. I’ve found that salty meals & chocolate make the ringing in my ears worse. I was told by the ENT who diagnosed the Meniere’s to eat a low salt diet & stay away from caffeine. Guess he knew what he was talking about!I Every time I eat even 1 square of chocolate, my tinnitus ramps up. Sooo annyoing!!
I have had both of my styloids (1 removed at the skull base; the other just shortened because a nerve was wrapped around it, & stylohyoid ligaments removed abt 3 years ago. All is well so far. I’m sorry to hear you’ve had regrowth.

Never thought regrowth was even possible…sigh…
I can’t seem to put ear plugs in or even around my ears. They start hurting so quickly. If I have to use a food processor, blender, vacuum, ect, I use my Bose noise cancelling around the ear but only for short periods. I haven’t found any in ear plugs that will fit comfortably.
Must have super small ear holes. :joy:

Howard Leight earplugs available on Amazon come in a size for smaller ear holes. I just ordered some as I’ve been curious if they’d work better for me than their standard size.
I also have small ear holes, too! Have never been able to use bluetooth headsets or earbuds, etc. They hurt or won’t stay in. I have to wear earplugs when I vacuum, use the blender or anything noisy. Totally get what you’re going through. Have done this for several years. Earplugs used to hurt but I think I forced my ear holes to adapt over time.
Here’s the link for the smaller size earplugs:

I’m glad your noise cancelling head phones work in the meantime.

:yum:

Very much appreciate that!
You know one noise that really kills me?
My mother-in-law​:joy::joy::joy::joy: her high pitched southern twang hurts me even when my husband is talking to her on the phone across the room​:roll_eyes: Imma baaad girl for admitting that.

Hope you don’t have to listen too often, then!! You are indeed very bad! :wink:

Teehee😂 It’s got to be a frequency thing…between her, any redneck’s truck with loud glass pipes and those little green frogs that stick to my back doors and croak before a thunderstorm (how do I find a deterrent for those buggars!?)
It will drive you ape #*%t…!!! All you can do is laugh after the fact.

The fan in one of our bathrooms gets my ear when my hearing is sensitive & being in a noisy group setting makes my brain go all wonky. It’s kinda weird how hyperacusis messes w/ the brain waves. :roll_eyes:

You got that right! I’ve opted for becoming agoraphobic…
People out there are without a lick of common sense anyway. Especially here in Louisiana🙄

My friend & her family just attended their daughter’s wedding in Lake Charles last week. Apparently their daughter is quite content in Louisiana, or perhaps it’s just the good companion by her side that makes it a happy place for her. :yum:
I suspect we all feel like that to a certain extent - I think we’re losing the sense of “common sense” in our high tech world where we now have everything at our fingertips & mostly have instant gratification. We’re losing the ability to wait, use our brains, & exercise common sense …

Sounds like your Vagas nerve is affected in some way/being stimulated

I think you are probably right there. I recently had some of my CT with contrast results and found out that on the left side my stylohyoid ligament is 58mms and calcified, and on the right side I have clumps of calcification with the longest clump being 28mms however, I don’t know the length of that one. I get intermittent pain in my neck as well as the other symptoms that I previously mentioned. It is nice to be a part of this group as everyone on here realises that ES can lead to a range of weird symptoms that tend to get dismissed by members of the medical profession, and usually when it is detected its by accident ie. when having dental problems (and having a panoramic X-Ray).

I’m in Louisiana also and I think lack of common sense is a global phenomenon especially in politics. What bothers me the most is the lack of common courtesy. It seems to be spreading like a pandemic. Good luck with the noise problem. I get ear pain, tinnitus sometimes and loud noise bothers me when my headaches are real bad. It’s unusual for me not to have a headache.

Sorry to hear you have chronic headaches. Are you scheduled for ES surgery? A number of people who’ve had headache symptoms were fully rid of headaches post op.

Thanks. Unfortunately, I’m not scheduled for ES surgery. I had surgery at Tulane in New Orleans about 2 years ago. After the surgery the Dr told me that he was only able to take the tip of the styloid off because it was right on the facial nerve and he was worried about causing permanent damage. I got no relief from the surgery. I recently joined this site and have been trying to look through other sufferers posts to compare symptoms and searching for a Dr that may be able to help me. As every one that has this knows, it’s very difficult to find doctors that have experience with this, and if they do, they don’t want to believe that this is what’s causing your symptoms. It’s very frustrating. I truly believe that this is extremely under diagnosed. I’ve suffered for a long time and had been to many doctors before I was finally diagnosed and that was because I stuck my finger in my throat and felt the lump from the styloid process and made the doctor feel it also.

I know you live far from PA & CA, but if you are able to travel to see Dr. Cognetti or Dr. Samji, I believe either one could help you. That said, you’d need a new CT scan & diagnosis to submit ahead of time. Both doctors do phone consults for a fee which would save you an initial trip to find out if either would be willing to do a revision surgery. Might be worth pursuing it so you don’t have to live in pain for the rest of your life.