Ehlers Danlos is the Syndrome that just keeps on giving. Today I had the joys of having a tuning forks placed on odd parts of my head. No, this wasn’t some strange hippy healing ceremony, but a real life scientific hearing test.
My doctor bashed it against her desk then placed it on various parts of my skull. Everyone else could hear it except me. Seriously, you heard that? Shit.
Having checked her unusual methods on Dr Google, this was to see the type of hearing loss I have. It is actually a thing that rules out my sinuses or ear canal causing the issue.
I’d suffered a bit of hearing loss after having meningitis in 2008, but not huge volumes or enough to affect my daily life. More recently, I’ve caught myself snapping at the kids to stop mumbling when we’re in the car & insisting that Mr Geek be facing me when I talk to him because he’s talking in the wrong direction… I’m surprised no one had mentioned it TBH. The penny dropped when I went back to school and couldn’t hear the kids when they answer questions in class. I can see their lips move, but all I get is a background hum if there’s other noise. There is ALWAYS other noise in a school & I’m exhausted by lunch from second guessing what they’re saying. But I didn’t really want it to be a thing (I have enough things! I don’t need any more things.). It is apparently quite an obvious thing according to my graphs. See? Graphs. I love a good graph.
The joys of EDS means that the bones in my ears aren’t held together as tightly as they could be. Of all joints, my ears?! FFS.
So what now? Well, I started off with an off handed tweet.
…and now, I’m trying out some basic hearing aids to see if they help & waiting to see how my referral to Action for Hearing Loss can help. Things may take a little while because I’m under 55 and I’m not meant to lose my hearing before I get old. I am a woman of many talents: I can lose my mobility, consciousness, AND my hearing. Go me.
The Hippy Geek 
Wish I knew sign language for “holy shit, this sucks!” Thinking of you lots.
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It’s a bit daunting. But putting the hearing aids in earlier was like taking those in early headphones out after wearing them for months! I had no idea how much I was compensating by watching faces.
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That sucks amigo! I’ve had problems with my ears my whole life – I wonder if it’s also EDS related?! Never thought about it before đŸ˜§
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It does. I’m not sure how I feel about it tbh
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I think with EDS you just have to take it on the chin when another part of your body starts being a jerk. Otherwise we’d all be in meltdown mode every few months. The crappy body lottery is stressful.
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I like your style. From this point on, my body is a jerk & I’m not talking to it! Thanks for cheering me up xx
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When my body is a jerk I fill it up with chocolate and wine and deny it any nourishment for a few days. TAKE THAT JERK BODY! I’m so badass.
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Ya know, I hadn’t made an EDS connection yet, but it makes perfect sense regarding my diminished hearing. Haven’t had any testing done, but I know from an MRI that ear-skull connection bone is inflamed on one side. Hmm… Thanks for sharing this! And brokendownbody, you’re absolutely right. Kinda like tripping on the sidewalk – just take it in stride, keep right on moving forward, and laugh it off if you can. It’s a waste of energy, I think, to react every time you’re struck with a fumble.
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I have similar sensorineural kind of hearing problems – I cant discern what is being said in presence of ambient noise. IMO my body is just a defective piece that came out of the assembly line. The machines had gone berserk for a while I guess due to a power fluctuation, and I was made. No QC apparently.
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That’s brilliant! We should demand better baby QC!
On the upside, I have discovered how nice it is to turn the hearing aids OFF!
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Hello. i am new to following your blog đŸ™‚ I came across this post when i was searching for things related to hearing loss. It really does sound like you are having a difficult time of it at the moment.
6 months ago i experienced sudden sensorineural hearing loss in my left ear, which has left me deaf in this ear. With my one working ear, i am struggling to hear anything if there is any background noise – amongst many other issues! i am also under 55 – I am 34. I also have had lots of tests, including the tuning fork one, which i’d completely forgotten about until i read your post! I am also a teacher. I have been off work since I lost my hearing. i tried to go back, but couldn’t hear what the children were saying, or where their voices were coming from (I teach 4 year olds) I also had vertigo at the time too! Anyway, I just wondered how you are doing now? Are you adapting to using the hearing aids? Are they helpful? Take care and best wishes. Carly
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Hi Carly,
I’m doing really well with my hearing aids. I’m getting much better at lipreading & being older, the kids are quite tolerant of my occasional lack of clarity!
One thing I’ve done to make it easier on both me & the kids is to decorate my hearing aids with sparkles & stickers.
Sorry to hear you had to stop work because of it. How are you doing now?
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Hello. Thank you for your reply. I am happy to hear you are doing well with your hearing aids and i love the idea of decorating them with sparkles! I am doing ok. Finding socialising very difficult, especially if it is with more than one person and if there is any background noise. Not back at work yet, as am still having more tests and consultations…I am more tired than i used to be – hearing is difficult and the world is noisy! Step by step! Take care. Carly
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Ooh yes! Hearing is exhausting.
Quite often I take my “ears” off as I just get overwhelmed by all the sounds I’d lost. Actually going back into my quiet tinnitus filled world is quite nice!
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