Nearly 2 Years of Hell. ETD and Tinnitus. Need Help and Advice.

Hello. I'm James and live in the UK, I'm 27 years old. I've pretty much never made an account on a forum like this and posted before. I've reached a point now where it feels like nothing is working or can work. I'm feeling desperate and i'm looking for any advice for people who are suffering like me. Sorry if this sounds very rambly but this is my story so far.

It started around March last year when I had some sort of upper respiratory infection. I had a cold, ears got stuffy, nothing that hasn't happened before. But this time my left ear remained stuffy long after the cold was over. I figured it'd go on its own but then I started to notice that my hearing was dulled and, at times, very crackly. Certain frequencies and loud sounds would make a crackling sound in my ear. It became quite uncomfortable at times. This went on for a good few weeks and then slowly but surely, another noise developed in my ear. A high pitched ringing sound, the cursed tinnitus began.

This got louder and more intrusive as the months went on and my hearing got worse. It didn't show any signs of getting better and then even when I thought this was as bad as it could get, it spread to my other ear about half a year later.

I couldn't believe that I could be kicked even harder when I was down but the problem that began in just my left ear has now spread to my right and it's actually worse in that ear. My right ear, which was once my good ear, is now my worst ear. I struggle to hear out of it and the tinnitus is unbearable in quiet rooms. I have high pitched tinnitus in my left ear a bit lower pitched, more aggressive sounding tinnitus in my right ear. My hearing in both ears has significantly degraded, but it's much worse in my right ear.

I have been to the ETD clinic around 6 - 10 times since my issues began. I've been recommended pretty much all the typical stuff you can think of. Nasal sprays, holding my nose and blowing, decongestants, and just allowing time for it to 'go away on its own'. Nothing has helped.

A few months ago, after exhausting all other options, I took the plunge and had grommets installed in my ear drums. The ETD doctor said there was a chance this could equalise any pressure imbalances and hopefully fix my problem. So far, it hasn't helped at all and my problems such as hearing loss and tinnitus are arguably worse now. I'm just looking forward to the day they fall out or are removed.

So here I am. Coming up 2 years now since my problems began. I feel its highly likely my ETD has come from the cold I had which happened around the same time, it seems pretty coincidental if not. I also have TMJ problems which i've looked into and can also be a contributor to ETD so that might also be a factor.

One thing I have noticed is that sometimes when I chew, yawn, burp or adjust my facial expressions in certain ways, the hearing comes back, as though the eustachian tubes are opening for brief periods of time and my ability to hear becomes significantly better for a short window. This suggests that my hearing ability is not damaged but the processes that transfers it through my ear is not working as it should. I hold on to this that one day I can get things working normally again.

I get on with life but some days I do just feel hopeless. Tinnitus can't be escaped. It's always there. Constantly whirring away. I often put earphones in and listen to music while on my computer to drown it out and have some hours of peace.

The ETD doctor i saw last has now referred me to Audiology and we're going for hearing aids. The idea is that increasing the volume will help bring the tinnitus down since my tinnitus has been brought on by my degraded hearing. I'm doubtful about this as it's only masking a problem. The underlying issue is still there and I want it fixed rather than masked. Have any of you found that hearing aids helps with ETD?

So this is my long rambly story about where I am now. Has anyone else had a similar journey to me. Have any of you got better? Have any of you found that hearing aids helps with ETD? Is there some secret trick out there that I don't know about that can help me? The idea I could live the rest of my life like this is not something I am willing to accept. There has to be something that can be done?

 

I have hearing aids and it definitely helps. It helps mask T away and I am my happy self I suggest hearing aids and keep trying to figure out what's your underlying problem to tinnitus. There are so many research and trials, there will be a cure in the near future. Cheers

 

Thanks for the response. Good to know that hearing aids can be of benefit! Hopefully a cure can come about. It wouldn't go amiss right now

 

Please don't wear headphones if you can, they have a reputation of making t worse.

 

Has the specialist done that camera up the nose thing to look at your eustachian tubes to actually confirm you have ETD?

I thought I had ETD but it was only when I did the camera up nose thing it was found out I have the opposite being patulous eustachian tube which often gets misdiagnosed as symptoms are similar.

It’s quick and painless

 

I had the camera up the nose thing a while back. He said it looked a little inflamed and it's likely I have some sort of eustachian tube problem. I didn't get much more out of it tbh. I think the ENT doctors are not very adept at diagnosing and fixing these issues. They originally said it would likely go away on its own and here I am two years later and it's worse than ever. Did your patulous eustachian tube get better?

 

Hey are you able to "pop" your ears via the valsalva maneuver or the ear popper? Also, have you had an mir or cat scan?

 

they crackle and pop a bit as the Eustachian tubes open but then the air just blows through the grommets that i now have my ears so it's more like a wind tunnel. Grommets were a bad idea, its not helped anything. I've recently looked in to Otosclerosis and after comparing my symptoms i think there's a very strong chance i could actually have it. Trying to see my ENT as soon as possible but there's always a long wait. I had a MRI a while back, nothing was found. Haven't had a CT yet but i'm going to request one as it can help diagnose Otosclerosis if i have it.

 

Hello James are you still having issues?

 

I have gone through some time in my life with ETD problems like 4 times, what gets me though it is Prayer God has really helped me though it at this point please ask God to help you, he can heal you of this problem......

 

I am going through it right now my ear hurts they don't know why I really don't think ENT's really know what they are doing you can also see a neurologist as the ringing actually doesn't come straight from the Ear but the brain..

 

I tried grommets and they did nothing for my noise. Your ears will heal and then the grommets will fall out or end up in your ear wax. We get so desperate we that will try anything to get rid of the noise. Grommets were a bad idea for me too. I thought as you did that ETD could be causing the noise.

 

I had a hearing test done they said I can hear, but my hearing feels like I can't hear like I should, I sure hope this goes away for all of us its very annoying

 

Sorry to hear you're going through it to Margaretz. Yeah grommets were a desperate effort but i should've known they weren't going to help. Very much looking forward to the day they drop out. I still believe this could be Otosclerosis that I have. If it isn't then it's something with identical symptoms. Managed to move my ENT appointment up to December 19th at which point i can request to have this specifically looked in to, but that's still too far for me. Recently it's got worse and now I really struggle to hear people in regular conversation, it's awful and isolating especially with the debilitating tinnitus on top. I'm going to speak with my GP again soon to try get seen faster.

If it started in one ear for you, then progressed in to the other ear and your hearing continues to get worse along with struggling to hear soft voices and sounds such as whispers and deeper sounds like bass, might be worth looking in to Otosclerosis. It's common for it to start in the mid to late twenties which is exactly when it started for me. I can hear conversation better in louder environments with lots of background noise as opposed to being in a quiet room, which is quite specific to Otosclerosis I've come to learn. There is a link to this being a genetic ailment but can also happen with no link. The scary thing about it is that if left untreated it can make the sufferer completely deaf eventually. I could be wrong in my assumption, but my ENT doctors have been useless and we have to be self sufficient.

I'm getting hearing aids on Monday so we'll see how that goes. Still worried it won't do much for the tinnitus which is really the worst of it all.

 

Hey Margaretz, can you share a story or two about how God got you through some of your ETD problems? I really need something encouraging right now.

 

I went to the ENT today. I am still not satisfied I feel he is not really trying to help just because my hearing came out normal he isn't doing much every time my ears hurt I feel a diminished in hearing..but the tests show different I don't know at this point what is wrong with me. I keep thinking an inner ear problem but like I said he basically kicked me out the door ha..I have another ENT appointment on Friday with the best one around. I should of seen him first..this ENT I seen today wants to send me to a neurologist..this ENT didn't say I had ETD. ear pressure was normal I feel horrible my ears feel full my left side hurts right now he doesn't see anything I told the Audiologist that my ear was hurting and felt dizzy when he looked in my ear...sigh! so now I am at home trying not to worry but I am going to call back tomorrow and ask more questions that I forgot to ask, when your trying to remember what you want to ask you forget. I can't see as I type I forgot to mention that, I wonder if TMJ can make you feel this way.

 

I also forgot to tell him my ear popped and I got dizzy

 

My T was ringing bad when taking the tone test. I could really hear him when he spoke though..so weird...but it only flares up when I feel I have ETD..when that subsides Its at a low frequency

 

Hi JasonP well all I did was pray about it and people prayed for me I was going crazy but he came through for me...here I am again this year in bad shape again I am going crazy how I feel but I try to keep positive and pray that God will help me through this ordeal again...

 

The ringing is what really bothers me right now trying to take a hearing test with the buzzing ugh!

 

ENTs are not that advanced in their field. A sinus specialist can usually can help more.
Ear pain, fullness, high pitch ringing.

 

I'm not necessarily encouraging this but you can learn to clear your e-tubes manually by reaching (sterile, gloved) finger behind your tonsil, inserting it into the entry to the e-tube, and then pulling it out to create suction. This is a trick that a chiro showed me when my e-tubes were blocked beyond the point of Sudafed by an infection. This is not comfortable or easy to do but it'd be interesting to see if it gives you moments of "hearing better".

That said, I sometimes have the sensation of my ears "opening up" and I can hear more clearly; this has often been associated with meditation for me. I do not think it's a sign of healing, quite the contrary, I think it is a sign of my auditory system continually recalibrating and changing as I suffer the very normal age-related declines in hearing that I can continue to expect from now until I die, given that I am approaching middle age fast.

MD sinus specialists are just ENTs who have specialized in sinus issues; "sinus specialists" without an MD or equiv medical degree are not people I personally would trust...

saying that an entire field is not "advanced in their field" is... silly?

 

I have hearing aids now about 3 months. After ear infection eustacian tube infection I wound up with considerable hearing loss. With that I went to 2 different audiologist and both reccomended hearing aids. Now after the final adjustment the audiologist added a tinnitus mask app.
Some days I don't use the mask then when the T decides to get worse I turn it on and keep the mask just under the volume of the T. With that it takes my mind off the high pitch and I go on with my day. Honestly the hearing aids were a great investment they have helped more than just for hearing. It took quite some time to clear up the infection but once it had the hearing aids were then added. So give it a thought.
I'm across the pond from you, Wicklow county.

 

Hi James, thanks for your heartfelt story. I'm new here too and I can't offer much advice, but I can say hearing aids helped me to reduce, and some days even eliminate my T, which is high-pitched and in both hears. Of course, when I take them off at night the T comes back, perhaps more noticeably because of the contrast. Anyhow, I hope you get some relief from hearing aids or whatever else you pursue.

 

Go for the hearing aids with built-in maskers that you can control on devices including smartphones. I chose Widex Evoke after much research. Costly but worth it.

 

Wow didn't know that.