Ear Hearing problems and distortion fluctuations

Ears, nose and throat
1

Hi there,

I was wondering if anyone else is experiencing this issue - about 5 months ago I woke up one morning with severe hearing loss in my right ear - specifically, the hearing loss was really around lower frequency noise (all low frequency noises have a real noticeable vibration and distortion in my right ear).

I did all the tests - Doctors did hearing tests and confirmed there was a HUGE jump down in decibels in my right ear - specifically around the low frequency side of things (which makes sense due to my low frequency distortion and way of hearing)...

After then proceeding with all the tests to rule anything else out (I had a brain scan MRI, more hearing tests, ears were assessed etc etc... The doctors have no idea whats causing it, and have ruled it down to "sudden sensonuerial hearing loss"..

However, heres the catch 22 ... After seeing a specialist for Ear's she explained to me that SSNHL... should NOT be giving me fluctuations in my ear... It is a sudden loss in hearing of which, either gets better with time or doesent at all...

This is why I want to explain what im feeling below right now and if anyone else has experienced this..

Essentially, since it started, It has gotten much better but ive noticed a pattern which is incredibly strange.

My right Ear has never been the same since I woke up with that almost deafness - but what it does do is fluctuate.. I have good days and bad days.. Sometimes I have a good couple of weeks!...

What happens is this -  I will wake up, and notice that my hearing in the right ear has dropped.. and everything sounds a but funny, if i run my finger across my Ear it sounds more blocked.. and then when a car drives by I notice the lower noise frequency vibrates and sounds odd in my ear.. ive also notice that all noise in the right ear soudns incredibly weird.. and distorted.. People voices sound almost robotic over the phone.. and its a real distorted uncomfotable feeling with this sensation of a low frequency tinnitus humming constantly (part of me thinks.. it is tinnitus, of which, the frequency it is humming is overshadowing my normal hearing and causing sound to be distorted and weird)...

THEN! ... after 24-48 hours of this.. sometimes 3 days. I get a piercing loud high pitch in the ear (different tone of tinnitus?) BUT all of my hearing is back!! which is fantastic.. and I hear normally.. with exception of the tinnitus constantly there (this doesent bother me so much.. I am starting to live with it...) 

What I dont understand is its like my ear is constantly fluctuating from normal hearing... to low distorted frequency and odd vibrations with a drop in hearing.. to almost "fixing" itself back to normal but with a high pitch of tinnitus coming in... 

Its back and forth back and forth.. which kind of sucks, as every morning I wake up its like a gamble whether or not I hear that low vibration frequency echoing in my ear.. then I know straight away.. Yup... Ear is going to be crap the next couple of days...

Does anyone else have this constant fluctuation in hearing and tones? - If so, what is it!? what have you done to alleviate it.

The only thing that gives me happiness is the fact its not constant.. but it would be nice to find something to alleviate the fluctuation frequency.

Additionally, the ONLY pattern (of which I am not 100% sure on this... ) Ive notived is it may be down to stress.. Ive noticed when I have something big on whether its a work function etc... without fail, my Ear will go blocked, low frequency vibrations and annoying.. then after the function within a day or two it clears up again... It could be just coincidence based on my "ear cycle" of it changing.. but it may be a pattern I need to assess more moving forward.

Maybe its time to start mediating... 

Cheers!

 

2

I'm going through problem you've deacribed, yes it was and is patternal but patterns have got worse with medicines so my advice to you is at no cost touch medicines.

Secondly, my right ear was affected and it started like this sudden fading of hearing in right ear in a period of 24-48 hours, no-to very little hearing unsurvivable for 3 days then it recovers, eventually returning to pre-deafness position. At first it came in month or two, it was no problem for me to take a break of 5 days in month or two. Cold drinks or dairy products in high amount and ejaculation possibly triggered it.

It continued for like this until after year or so i picked up medicines like steroids and refused to be thankful for current condition which was far better and little to no problem. Medicines especially prednisolone made it worse and worse and now pattern has worsened to point where 1 week no hearing and 1 week hearing good.

It has affected me more since I'm pre deaf in left ear and it was no problem for me till this strange thing affected me in right ear.

My advice to you is, don't stress out, be patient and thankful that your left is good and hearing returns and only goes for 3 days. Take a break from docotor, negativity.

My last and most important advice, don't take it on head, trauma will cause more damage than the problem itself so so not waver doubts, only and only find what triggers the problem and stop the activity, my advice is check which food/drink effects it but do not stop eating everything as a result of doubt, continue with life and think less about it. 

Do not waver suspense and doubt, this was the most drastic effect on me. I stopped everything in fear that it will trigger the attack, trick is to give less importance to it.

If you find any diagnosis, be sure to share it with me. Check on diary products, try cutting on milk and high phosphate products. MAybe your inner ear fluid balance gets disturbed along with bodily fluid changes. Sex/ejaculation may have effect. Monitor your activities drinks and sex mostly and their connection with attack but only monitor dont restrict yet

3

I woke up one day last May and my hearing was like being under water.  Doctors said "sudden hearing loss caused by a virus". I have hearing aids now but distortion which makes music difficult.

4

Hi James

I’m struggling with exactly the same condition as you, affecting my left ear. Losing lower frequencies, hearing distorted, roaring tinnitus, music makes no sense etc 

Just like you, after massive tinnitus which seems to run through many frequencies, mercifully always at night, it seems to cure itself, only to happen again sometimes months later. 

The last two times it happened, I’ve had a bad cold and squelchy Eustachian tube so suspect ETD might be part of the issue. The first time it happened, back in April 17, I was pretty stressed so, like you, suspected that might be another part of the jigsaw. I also have sensoneural hearing loss at high freq in both ears probably due to playing in loud bands for years and my age! (66) 

It’s driving me pretty crazy as, as you say, I never know what the next day will bring. If it was constant, I’d be happy to just live with it and let my hearing aids do their job. As it is, I feel as though my hearing is given back and then taken away again which is emotionally very tough. I’ve more or less stopped gigging as I never know whether or not I’ll be able to do it. 

How are you getting on 6 months after your first post?

Cheers 

Bill

5

How are your ears now? I have the same situation as you. Trying to figure out what the hell is going on. 

6

Same symptoms here. Have your found any help? I have been diagnosed with cochlear hydrops. Currently on steroids, not helping thus far. This is emotionally very worrisome. 

7

Not much change for me.  I have issues with higher pitch sounds and distortion.  Vocal music is very difficult - almost impossible to sing because I can not hear pitches.  I play low brass and the lower the pitch the better, so I might switch from trombone to tuba.  I know it does not sound like a big deal, but if you have spent your life with music it is tough to have it taken away.  I wish they made tunable hearing aids so I could match pitch from side to side.  Best of luck to you, I hope your hearing improves.

8

Thanks so much for replying. I'm sorry to hear you haven't had improvement. This is such a frustrating disorder. I have lost the low frequencies. Yes, I can imagine that the loss is that much more substantial for you since you play music. I wish healing for us both. Did you happen to try steroids when you first had the loss? I am on them now but the side effects are pretty rough (and haven't noticed hearing improvement either)

9

Hello everyone

Just wanting an update on everyone’s progress and to share my own experience.

5 weeks ago I suddenly noticed that the sound on the television or radio was distorted. By the next day I had a blocked feeling in my left ear and there was an awful noise when driving the car. 

I had my ears checked at the local primary care centre and was told they were bunged up with wax.

i went to see ENT specialist who did micro suction and removed all the wax. He also did a hearing test which showed some hearing loss on the right side.

Over the next few days things did not improve and I began to panic so I went back to the specialist and found that the hearing was okay in the right ear but had now dropped in the left!!!

he advised a short course of high dose steroids and anti virals which I took but unfortunately did not help. 

5 weeks later now and I am no better. Have had normal MRI scan of the acoustic nerves. Now have tinnitus also and am feeling lightheaded and generally strange. But the main upset remains the distortion . There is also some sensitivity to noise - like the ear is very “nervy”. The hearing loss seems to still fluctuate from ear to ear which is weird.

i am feeling really panicky and upset which I know is probably making things worse but I can’t seem to help it. Had an ENT appointment today and they were very unempathetic. I was just basically told that there is nothing else they can do and I would have to learn to live with it. 

I don’t know where to turn next. Any advice appreciated

10

Hi Janet, I have a similar story. Unfortunately, the distortion is part of the hearing loss. Did you only lose your low frequencies? I had my original loss 11 months ago and improved a little bit but it's been mostly stable. I follow a low-sodium diet, take betahistine, and drink 3 liters of water per day, which seems to help. 

11

Hi Kathleen

Many thanks for your reply. It’s good to talk to someone with similar issues - I’m finding many people don’t understand what it’s like and how frightening it is. 

I’ve seen a naturopath and after doing her tests she says I have irritation to the acoustic nerve caused by heavy metal toxins leeching from metal fillings in my teeth. She has started me on some detoxification drops called NCD2 . I am certainly going to give this a try as these drops also claim to stop viral replication and are 100% natural. She’s also advised us to install a Raditech in our house which eliminates Geopathic stress and electrical pollution within our house. 

Will keep you posted on any progress x

12

Hi Janet, great to talk to you. I have sought out many practitioners as well, I would warn you to have a critical eye and ear when people make claims that can't be proven (toxic metals leeching from your fillings). I wouldn't want you to ingest a substance that may further compromise your health. That being said, because the condition is idiopathic it's hard to know what could be the potential cause. Have you looked at TMJ or any other problems with your jaw? There are some who have improved their hearing by improving the health of their TMJs. There's also a strong stress component to this condition, possibly due to ADH (stress hormone), there is some published research about this as well. I wish you well on your healing journey!

13

Hi Kathleen 

Thanks for your reply . I don’t have any jaw problems but will look into ADH info. 

Finding it so hard to come to terms with as it’s changing all the time. The deafness seems to move from ear to ear - in fact I’ve got up this morning and it’s in both! 

Have you found any ways to cope with the distortion? Finding it so difficult to listen to music or tv- and find it very difficult in restaurants when  music is playing. It seems to be impacting on all the things I love to do. 

It’s really helpful to talk to someone who has been through the same thing. 

14

Hi Janet, I'm sorry to hear about the distortions. Mine settled down after the first few months. I agree that this is a very disheartening condition. I've mostly accepted it, but still looking for ways to recover my hearing at the same time. Hang in there!

15

Hi kathleen we have same symptoms you said your distorted hearing was settled down? May i know what did you do? Thnk you

16

Hey everyone,

I too have the exact same issue. 4 weeks ago my left ear started to get sound distortion, then filled up with fluid. Tinnitus set in and then I was slightly dizzy (not vertigo) for a couple days. I was put on prednisone for 3 weeks and that did very minimal to restore my hearing. After 3 weeks though, the distortion came back, but i only hear it at certain decibel levels. It has to be loud for it to sound distorted. Has the distortion gone away for anybody? The tinnitus is still there after 4 weeks. This is pretty debillitating.

17

i also lost about 80% hearing that hasnt really improved

18

some articles and forum and asked some people who have been inti distorted hearing , recovered it for almost 4 to 6 months other is 1 year , i have distorted hearing and its seems lessen now , its my 1 and half month of having this. but its not as bad as before so i am hoping that it will be back to normal again . i also have some issue with my hearing like sometimes i thumping in my affected ears have you experience this? and i am a little bit sensitive to loud sound . what was your ent advice to you?

19

Jame have you have any update, change, or relief? I suffer then same as you.

20

Hi Andrew,

I was hoping for an update on your situation.

I am currently experiencing exactly the same symptoms.

5 months ago, I experienced SSNHL in my right ear.

What followed is exactly as you described. A feeling of fullness, hearing loss, distortion of low frequencies and then loud tinnitus and a return of hearing. Then the cycle starts again. The cycles can last anywhere from 1 day to 1 week.

I have not read of anyone else who has experienced this cycle.
My ENT is baffled.

I would be so grateful to hear what has happened since you posted.