Hearing Difficulties -Possibly EDS Related?

Yup, those are my earbots!

I haven’t actually needed these for the last while. When I’m at a certain level of hearing I get used to it and end up not wearing them unless I’m having a really bad hearing day (yes, it goes up and down on occasion, which is frustrating!) but my hearing is gone really very crap again, I’m not hearing Keith when he is talking to me and I’m missing things, so these ugly boys are out again.

I have had severe bilateral hearing loss and consistent ear trouble since the age of 7.

I don’t talk about it much as it embarrasses me and I just get self conscious if I know that’s what other people are thinking about when they talk to me, plus they always want to test my lip reading, which is a nice party trick but isn’t that easy to do on the hop, as you must consider all context of the conversation, you also must be somewhat used to the person you are talking to. I find it takes me a little time to get used to talking to someone new before I am comfortable enough around them to ‘get’ what they are saying and it takes me even longer to get used to a bearded man. Everyone pronounces things and moves their mouth differently. I find a tiny bit of tone or sound helps me also as that is how I’m used to using it.

On my last hearing test, which was over 6 or 7 years ago now, showed that my left ear has only about 15% hearing remaining and my right has about 35% hearing. It certainly feels as though it’s a lot worse now!

It is called SensoryNeural Hearing Loss, caused by underdeveloped Eustachian Tubes that are dysfunctional, middle ear disease (where the 3 tiny bones in my ear behind the eardrums are wasting away) and also Adult Otitis Media.

Hearing problems also run throughout my dads side of the family anyway.

My symptoms throughout my life include:

1: Constant fluid build up in the middle ears (called glue ear in kids) causing wastage of the middle ear and mastoid bones and ‘leaky ears’, adding to the hearing loss accumulativly over the years and will probably continue to do so as I get older.

2: Reoccurring ear infections causing further fluid and damage.

3: Shooting sensations of random sharp pain in the eardrums.

4: What feels like spasming of the eardrum or close muscles.

5: I produce little or no earwax which serves to protect and moisten the ear, so my ear canals are narrow and raw with dry, flaky, very itchy inner ears.

6: and probably the most annoying – are clicking, crackling and ‘ocean’, sounds coming from deep in my ear. (Like if you put your ear to one of those seashells, I could never actually hear that!) I sometimes hear my heartbeat clicking too, especially if I lie down and also sensations of ‘breathing through my eardrums”, it’s the only way I can describe it. As I breath, I can hear and feel my breath escape through my eardrums causing sharp pain and the feeling of movement as I do so.

This, according to my ENT surgical consultant, is because my Eustachian tubes are always closed and dysfunctional. Sometimes they open up like normal people’s ears and the feeling is so alien to me because I’m simply not used to it that way!

Looking back now, I would’nt be  at all surprised if it was somehow associated with my EDS.

I have had 12 operations on my ears under general anaesthetic which have scarred my eardrums irreparably making them very thin, fragile and they rupture very easily.

I have worn hearing aids since the age of about 12. I learned to lip read from an early age to compensate for what I was missing in school etc. and I learned some Irish Sign Language in my college years (not fluently at all!)

I was diagnosed as clinically deaf at the age of 19 but it’s not like I can’t hear anything!!

I have a lot of difficulty, especially with background noise, I have dropped notes while listening to music because I can’t hear some frequencies, or in a group situation, where I’m speaking either too soft or too loud because I can’t determine my own volume! but in general, if I’m one to one with you, I’ll watch your mouth and catch a lot of what you’re saying! (Please don’t mind me if I look like I’m checking you out, I’m not, really!) :p

I have been referred back to my ENT surgical consultant now so hopefully I wont have to wait too long to see him to see what he says and what the updates are.

Apparently I hide it well, I dunno though, I ask “WHAT”? A gazillion times a day like!! :p
So, have you any hearing difficulties that may or may not be associated with EDS or your particular chronic illness?

Let us know and share your comments below. 🙂

Thanks for reading, and as always, feel free to share – Lette (Fainting Goat)