Tinnitus, TTTS, New Diagnosis of Endolymphatic Hydrops and Really Struggling

Hi all,

I'm Katy, live in the East of England, and am new to Tinnitus Talk.

I've had tinnitus for years but learnt to live with it. Recently, I developed more ear symptoms and am now really struggling both physically and psychologically. I'm hoping somebody may have some idea what the hell is going on with me? Especially as I capitulated and saw a private ENT surgeon on Friday and came out with a diagnosis I'm not convinced of. I'll try to give as brief a history as possible:

2014 - woke up with unilateral tinnitus (left ear), saw GP and they referred me for an MRI to check for anything sinister like an acoustic neuroma. All clear. Learnt to live with it over the years and only noticed it when I was reminded/thought of it for some reason.

2019 - started getting horrid flutterings/spasms in my left ear. Very difficult to describe, you know that low sound/feeling in your ear when you yawn deeply or your squeeze your eye really tightly closed? Like that but completely involuntarily and sometimes accompanied with pain. Also started getting occasional muffled hearing in either left or right ear for a day or so, these were very few and far between though. I self-diagnosed myself with TTTS, but didn't seek any medical help as after doing some reading I saw it was anxiety-based. This was probably idiotic, but I had been suffering from anxiety issues for many years and had learnt to explain away many physical symptoms as being all due to that, plus I had been backwards and forwards to the GP and hospital so many times at that time due to having a massive pulmonary embolism (post-operative after leg surgery) - which in itself caused more anxiety and was diagnosed with PTSD.

A few weeks ago - long term tinnitus still the same, but started getting the occasional tweet (best way to describe the sound), mainly in left but sometimes in right ear too. The flutterings/spasms increased significantly and then got really nasty pressure/muffled/distorted feeling in left ear with occasional pain and aversion to loud sounds which gradually got worse over the period of a week. Strangely the spasms seemed to stop - either that, or it was in a constant spasm and I couldn't differentiate between individual ones. I did get a bit of respite, but it came back after a few days with a vengeance. Then one morning at 3 am (after a couple of sleepless nights due to the left ear) I woke up with the right ear feeling very full as well. As you can imagine, having the feeling in both ears was just horrendous - feelings of claustrophobia and panic.

I saw an ENT surgeon on Friday which I had booked a couple of weeks ago when things started to get worse (coincidentally I was experiencing my worst day with both ears), who did a hearing test that showed a little loss in my left ear at the lower end of the spectrum, checked my ear drums and middle ear pressure - all fine. I explained my history including the spasms and he looked at me like I was mad and totally dismissed it. He eventually said he thought I had Cochlear/Endolymphatic hydrops and sent me away with a prescription for Betahistine and Prednisolone. I've started the former, but haven't yet started the steroids as I've had such little sleep over the past week (average 3 hours a night) and I know they can cause insomnia, so am trying to get some sleep under my belt before I start them.

When I got his diagnosis I was immediately happier as at least I knew what I was facing, and had some sort of plan - and strangely in that immediate aftermath of my appointment, my symptoms reduced somewhat. Since then I've become more depressed and symptoms worsened again, although my right ear seems to be much better - and the left ear symptoms, although always there, seem to be very subjective and fluctuate (I I've found that wearing an earplug in my right ear significantly reduces the spasming and muffling in the left, for example... go figure!).

I'm somewhat doubting his diagnosis as he was so dismissive of my TTTS-like symptoms and they seem so interlinked with what I am experiencing, plus I am experiencing pain in the ears (mainly left) which isn't associated with the Endolymphatic hydrops. I almost feel like the surgeon heard the symptoms that matched with the condition he diagnosed me with, but ignored the ones that didn't - confirmation bias if you will. I do suffer from occasional attacks of what I initially thought was vertigo since 2017 (can last up to a month - had about 3 attacks now) but is actually disequilibrium, but these don't coincide with my other ear issues.

Firstly - if you've got this far - thank you! I will of course continue the treatment he's given me, and I am to make an appointment with him for a follow up in 4 weeks, but I am desperate to get an answer about the spasms and pain as the increase in these is what seems to have brought on the pressure/muffled hearing symptoms. NB: I've also made a GP appointment as psychologically not really managing well with all of this.

 

So sorry to hear of your struggles here.

How are you now? A friend of mine has very similar symptoms to you x

 

Have you been listening to headphones or loud music a lot? Any loud noises? Go diving or any recent colds or sinus issues? Did you get COVID-19 vaccine?