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)

Neurogenic Bladder Dysfunction

Yup, I have yet another diagnosis!
This time I have confirmed Neurogenic Bladder Dysfunction. Though I have had some of these problems in the past, I first started having acute symptoms and was admitted to hospital last December (2015) and it was later confirmed after a Urodynamics Test showed little to zero activity in my Bladder on the 15th of March this year.

My first symptom was Urinary Retention. I would get the feeling to go and then couldn’t, it was awkward and then went 3 whole days without going. Lets just say it got more than a little uncomfortable with pressure, Sharp pain, severe nausea and I probably should have went to the hospital with it sooner as it can be very dangerous not being able to pee!

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According to the Wiki:

Signs and symptoms:

Urinary retention is characterised by poor urinary stream with intermittent flow, straining, a sense of incomplete voiding, and hesitancy (a delay between trying to urinate and the flow actually beginning). As the bladder remains full, it may lead to incontinence, nocturia (need to urinate at night), and high frequency. Acute retention, causing complete anuria, is a medical emergency, as the bladder can stretch to an enormous size, and possibly tear if not dealt with quickly. If the bladder distends enough, it becomes painful. In such a case, there may be suprapubic constant, dull, pain. The increase in bladder pressure can also prevent urine from entering the ureters or even cause urine to pass back up the ureters and get into the kidneys, causing hydronephrosis, and possibly pyonephrosis, kidney failure, and sepsis. A person should go straight to an emergency department or A&E service as soon as possible if unable to urinate with a painfully full bladder. – Wikipedia/UrinaryRetention

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I rang my doc for advice and he told me to go straight to A&E, he explained that urinary retention is considered a medical emergency and that I should be seen straight away if I go in. So I got my things together and went  in not really knowing what to expect, but at this stage I was in dire pain and discomfort.

When I got to the A&E I was surprised to find that they did treat it as an emergency and took me straight in, catheterised me to relieve the discomfort (that felt amazing, eventually, though it took an hour or more for the discomfort to subside only a bit, but it was enough to get a bit of comfort!)

Lots of blood tests and scans later they decided to admit me for more tests and observation.
I was in hospital for over a week as they needed to flush my system with antibiotics and fluids as there was blood found in my urine and an infection in my bladder and kidneys. A urology nurse had to come to show and explain to me that I had the option of using the full time Foley Indwelling Cathater that they had me on in the hospital, which is pretty intrusive to be honest, or I could use these small intermittent catathers that almost look like little lipstick tubes or even tampons, but small enough to fit in a purse and look rather inconspicuous.  I can use these whenever I need them and I wont have anything attachment to me full time.

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According to the Wiki:

Advantages: 
People with neurogenic bladder disorders like spinal cord injury, spina bifida or multiple sclerosis, and non-neurogenic bladder disorders like obstruction due to prostate enlargement, urethral strictures or post-operative urinary retention, need to be continuously catheterised to empty their urinary bladders. But such continuous catheterisation can lead to problems like urinary tract infections (UTI), urethral strictures or male infertility. Intermittent catheterisation at regular intervals avoids such negative effects of continuous long term catheterisation, but maintaining a low bladder pressure throughout the day. – Wikipedia/IntermittantCathaterisation

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Near the end of my stay the Urology team came to me with a ‘gift’!!! 🙂

My bag of intermittent cathaters! I actually smiled when I saw it. It was actually a cute set up! it came in a lovely stripy bag with instructions, Cathaters, Alcohol Hand Sanitation Gel, Sanitation Wipes and A Mirror to help you see where to put the cathater… like you didn’t know where to put it like, come on folks! but its a handy Mirror! :p

    

Once I got the knack of using them, and they tested my bladder to see how full it was after I went, to make sure I was voiding properly, and once that was all clear I could go home.

Over the next few months I needed to continue to use the intermittent cathaters daily and, despite a few small nicks here and there, I got very used to them.

I eventually was called for a Urodynamics Test on the 15th of March and after a dead performance from my bladder, they conformed Neurogenic Bladder Dysfunction.

It’s actually ok to deal with but people with this can be more prone to developing infections of the Urinary Tract, the Bladder and even can lead to kidney failure, so I am now being monitored to keep an eye on my kidney function and I need to come back in to do an updated urodynamics test and a kidney scan once every 6 months. Which I am very happy with considering the amount of medication I also take daily, I do worry about my kidneys and other organs being affected from long term use.

My next appointment for this test is in September and I will update you once I know about that 🙂

Chat soon, Lette (Fainting Goat!)