tinnitus and altered hearing (kazoo/robotic)

[Illustrator35]

hi, I have had moderate single sided hearing loss and tinnitus since 2018. About 7 weeks ago I woke up and noticed my hearing loss had worsened over night and I had extra tinnitus sounds. Along with this my own voice sounds massively louder than it used to and everything I can hear in my deaf ear sounds extra loud and robotic / as though things are being played through a kazoo including my own voice. The doctors were hesitant to help and as a result I was only seen by the emergency ent clinic this week and been told that these changes are permanent because I wasn’t referred quickly enough. I have now been referred for an outpatient appointment as well as an audiologist. I am also getting a feeling of my ear drum clicking when I swallow.

I was just wondering if anybody else on here has this robotic/ kazoo hearing? That along with the new tinnitus is causing me a lot of distress. If anybody on here has had/ got this altered hearing does or hearing aid help?

My current hearing aid is just making everything sound out of tune and just further magnifies the robotic/kazoo sounds I am hearing. I am struggling to do my job, I teach in an open plan building with lots of noise equipment and I just can’t tell what’s going on or what people are saying.

Any advice would be very great fully received. Thanks so much, Freya

[Beesmac]

hi Freyer - I can understand his distressed you must feel as a similar thing happened to me. I awoke one morning thinking my ear was blocked (2 1/2 years ago). but I was also sick and dizzy - I had Labyrinthitis. I suppose your ears have been checked for wax? I know how difficult it is at the moment even to try and talk to a medical professional. Hearing aids may help but hopefully whoever you see will also send you for an MRI. I have lost the ability to hear higher tones in my right ear, thankfully voices sound the same but I can’t identify music any more as it just sounds flat. I was in a dreadful state when it first happened so we know what you are going through. Good luck x

[Illustrator2022 in reply to Beesmac]

thank you so much for replying, I really appreciate it. Yes, been checked for wax, apparently ears and ear drums look in perfect condition and no fluid in ear etc… the doctor I saw at the emergency enc clinic said the altered hearing is because of the drop in hearing. I’ve had a hearing aid since about 2018 but since these new changes I can’t wear it because it makes everything much worse. I’ve been referred to ENT as an outpatient, to an audiologist and for an MRI so they can see what’s happening. The waiting is so frustrating isn’t it but I am so grateful for the help I’ve had so far and really appreciate it. My main worry is something happening to my better ear but I can’t live life worrying about that. I just didn’t think this woood happen and I just need to adjust which I know will take time.

Apparently I have lost all conversational audio now and lost all letters of the alphabet which explains a lot and has made the extra hearing loss make sense. Im sorry you can’t identify music anymore, that’s such a shame. This forum is so amazing for support and I hope to be able offer support to others on here like you have for me. Thanks again

[Beesmac in reply to Illustrator2022]

I meant to say that my tinnitus is not straightforward - as a result of the hearing loss i acquired musical ear syndrome (look it up - I am a classic example). I thought I was going mad - I hear undefined repetitive music 24/7 - My G P had never heard of it and just texted me the BTA website. It took me ages to accept this - even now I throw a wobbly sometimes and ask myself why me!! It doesn’t bother me as it used to but tinnitus in any shape or form is so stressful x

[Illustrator35 in reply to Beesmac]

I seem to have created two accounts by accident but the first reply to your comment is me! Sorry for thr confusion!

[Upbeatmap]

Hi Freyer

Hearing your own voice loudly like a kazoo is one of the symptoms of something called SSCD. It is not the only symptom as it goes along with others like pulsatile tinnitus, hyperacusis and others.

It is worth looking SSCD up to see if you have a number of the associated symptoms and, if you do, mentioning this to the ENT. The condition does not show up on MRIs and it needs a specific CT scan.

The first ENT I saw didn’t ask the right questions and dismissed my tinnitus but when I got a second opinion I happened to mention that loud noises had always made me dizzy (another of the symptoms) and he immediately suspected SSCD and did the CT scan, after which I got the diagnosis.

Good luck.

[Illustrator35 in reply to Upbeatmap]

hello, thanks so much for replying. I’ve never heard of SSCD but I have just had a google of it. It sounds awful just like all the other ear related issues and I’m sorry you have it. Are they able to treat it for you? I don’t get dizziness at all apart from when I get the strange noise in my ear which is triggered by changes in pressure and little burps, I then get dizziness for a split second but it totally goes after that moment. Loud noises aren’t causing me dizziness but I certainly feel very sensitive to them. I will be sure to mention this to the consultant when I see them, thank you so much again. Take care x

[Upbeatmap in reply to Illustrator35]

From what I understand, most people with SSCD have a few of the symptoms listed to one degree or another. For me, it was the pulsatile tinnitus, high sensitivity to noise, constant headaches and the autophany (hearing your own voice and other body sounds loudly). The dizziness with loud noises was probably the least problematic as it didn’t happen very often.

There are surgical options to plug the hole in the bones or the affected inner ear canal but they are fairly extreme. I’ve had 3 surgeries and, unfortunately, they didn’t really work all that well so I’m now focusing on living with it and the degradation of my hearing and balance as a result of the surgery.

I hope you get a resolution.

[Sassyjax1 in reply to Illustrator35]

I’m very new to all this and I too have had the robotic sounds. I have been wondering if this could be due to Eustachian tube dysfunction? I haven’t been referred for ENT yet, but on waiting list for audiology. I’m too scared to let anyone intefer right incase it’s all made worse. My robotic sounds came on suddenly and whilst watching tv. I then noticed it was people’s voices. Really odd. It seems to dissipate after days, only to return. I get like a base feed-back on my hearing in my left ear.

[Snappy001]

Hi I had a very similar experience, I have noise induced hearing loss and T diagnosed in 2012, after numerous examinations by ENT (both NHS & Private) I decided to buy hearing aids from Boots in February last year. They improved my hearing immensely and reduced my T to almost nothing for 1 week. Then on the Friday evening I was watching the rugby on tv and drifted off to sleep for about 10 minutes during the half time break. When I woke up I was almost totally deaf in both ears everything I could hear was in bass tones and almost unreadable. Also when I swallow or slam the car door belch or the car goes over a bump in the road I hear a weird noise in my ears it's probably something to do with the change in air pressure in my middle ear. I made an appointment to see an ENT consultant at a private hospital who was unable to give me an accurate diagnosis. I went back to Boots and the audiologist tested my hearing again and confirmed that my hearing had reduced in the higher frequency ranges he adjusted the settings on my hearing aids to compensate for the losses, but he admitted that he had never experienced anybody who had experienced such sudden hearing loss. Now my hearing with the aids is ok, but without them it nothing like it was before the incident took place.

[Illustrator35 in reply to Snappy001]

thanks so much for replying and I’m so sorry to hear about your sudden hearing loss. That’s so scary, I feel quite shocked since mine has happened as it has made such a huge difference to my ability to communicate. I am currently without a hearing aid because the audiologist at boots wouldn’t adjust it until I’ve been seen at the hospital again. It looks like that’s not going to be for weeks and weeks so I am feeling really frustrated about it and struggling with simple things like going to the shops and working. I get the weird noise in my ear when doing the things you mentioned, did anybody tell you what that is? To be honest I find that one of the most frustrating things. Thanks again for replying, take care x

[Snappy001 in reply to Illustrator35]

No I am waiting for an appointment at my local NHS Hospital but I am told it could take up to 12 months.

[meggiemog]

Hi Freya,

I have lost hearing in one ear too, and was given a hearing aid for my bad ear. Only problem is (as I was told by a private ENT specialist) if you aid an ear which isn't processing correctly - then it's amplified rubbish, so it will never work! I have since then lost some hearing in my good ear - but with the help of the private ENT (who was also NHS) I waited for a Bi-CROS hearing aid (I can't have a BAHA as my cochlear is damaged) - It's helped a lot, and makes things a bit better, but isn't perfect. I work on a reception desk - and have to be honest, I will need to change my job before my hearing gets much worse, as though the hearing aids help, I can't understand people who talk softly or have high pitched voices. Unfortunately people can be quite cruel as they talk to you as if you still hear as you did before, or get angry when you don't reply to them. I am very lucky my husband has a loud clear voice - and he is also my other 'ears' when we go out. It's a horrible position to be in and it has made me tone deaf in by bad ear, which to someone who adores music - is torture!!!

[Illustrator35 in reply to meggiemog]

hi, thanks so much for taking the time to reply, I really appreciate it. I’m so sorry about not being able to enjoy music in the same way, that’s really sad. I tried a new hearing aid out yesterday and like you said it just amplified rubbish! I had read about CROS hearing aids but when I mentioned it to the lady in specsavers she said I wasn’t quite deaf enough (even though my hearing loss is severe to profound) I just thought it would be good to try because my deaf ear is so distorted as well as deaf that this type of hearing aid might be worth a try. It was so frustrating that she wouldn’t even let me try but I will attempt to try one somewhere else, maybe when I am seen in the audiology department. I hope you carry on getting on okay with yours and I’m sorry people aren’t understanding with you, it’s surprising how many people have taken the mickey out of me since this happened. Take care x

[Cat_23]

I have had a blocked eustachia tube for 20 years and have been hearing my own voice vibrating back to me (like a kazoo sound) Recently I have started with pulsating tinitus....my heart beat/pulse and this causes great anxiety mostly in the evenings and bedtime. I was referred to ENT and prescribed a low steroid nasal spray for 3 months which has started to unblock my eustachia tube and hopefully will help with the pulsating tinitus. I have had tinitus (high pitched whistle) for years and continue to do so. A saline nasal spray also helps (purchased from Boots the chemist in the UK) This may help you 😊

[Illustrator35 in reply to Cat_23]

hi, thanks so much for your reply. Oh wow, 20 years? Is that because nothing can be done about a blocked Eustachian tube? How did they diagnose that? When they did, did they have any options for what to do? I am glad they are trying to sort out the pulsation tinnitus, that must be truly awful. I hope the nasal spray continues to work, I have everything crossed for you. Take care x

[Marlayna in reply to Cat_23]

I have blocks that come and go, which cause great distress. Western medicine didn’t help me much, but acupuncture works wonders for me.

[SimToTheWorld]

My husband had sudden hearing loss in one ear. We went to A&E straight away and he was given steroids and he recovered his hearing. It makes me mad to hear that people like yourself didn't get what they needed. Sudden hearing loss is more common then people think, and even your BP medicine can cause it.

I post this here so other people are aware that there is hope if this happens to anyone. Go straight to A&E and ask/demand steroid.

[Illustrator35 in reply to SimToTheWorld]

thank you so much for your reply, I really appreciate it. I’m so pleased to hear that your husband managed to get his sorted, there definitely seems to be a lack of awareness of sudden hearing loss. Thanks again and take care x