/r/MonoHearing

Photograph via snooOG

This is a sub for those who suffer Single Sided Deafness (SSD) or sudden sensorineural hearing loss (SSNHL).

Here you'll find help and assistance on coping with living in a mono world especially with regard to technology such as SSD hearing aids, headphones for music, gaming etc or simply assistance with accessibility features on computers and phones.

Specific advice about deafness or medical treatment is best handled by r/hearing and r/deaf

Handy Links From This Sub HERE

IF YOU HAVE SUFFERED SUDDEN HEARING LOSS PLEASE CONTACT A MEDICAL PROFESSIONAL AS SOON AS POSSIBLE

This is a sub for those who suffer Single Sided Deafness (SSD) or sudden sensorineural hearing loss (SSNHL). Whether congenitally or from later in life via injury or illness.

Here you'll find help and assistance on coping with living in a mono world especially with regard to technology such as SSD hearing aids, headphones for music, gaming etc or simply assistance with accessibility features on computers and phones. Or if you just want to chat about day to day mono issues.

Specific advice about deafness or medical treatment is best handled by r/hearing and r/deaf

Other Sub Reddits that may be of use.

/r/MonoHearing

6,231 Subscribers

4

monohearers, have you been advised to stop using earbuds, headphones and such?

11 Comments
2024/11/02
07:14 UTC

1

Activated Osia 2 today. What should I listen for over the weekend before I reconnect with my audiologist on Monday?

Excited, and a bit anxious, to have my left ear turned on. Based on my feedback during setup, my levels are set to about 60% of the range my audiologist would like me to be in. We expect to get there over time. My right ear "preforms normally"—just find high pitch loss that is normal for my age, I'm told.

I'm going to visit my audiologist on Monday so that I can provide some early feedback and potentially make adjustments. Would love to get advice from others about what to keep an eye on over the weekend.

Some things I'm thinking about already. Taking with a grain of salt as I recognize I'm only hours into hearing in my left ear for the first time I'm 20+ years.

  • Distant noises sometimes seem to overwhelm nearby noises and conversations
  • When my daughter (11) and wife are on my Osia side, I hear my wife clearly, but my daughter is is a struggle to hear
  • High pitches are loud and jarring (I have adjusted via the app). Perhaps related to the fact I haven't been able to hear them well in general before this.
  • The device seems to be training me to talk softly. My go to volume really drives my Osia crazy.
5 Comments
2024/11/01
20:10 UTC

11

Everything is… louder?

I lost my hearing in my left ear from an acoustic neuroma this year and I’ve been back to work for about a month now post-tumor removal surgery. I work as a line cook in an open kitchen and since I’ve been back, the sound of a restaurant full of guests talking, music playing, vent hoods on, etc is deafening (no pun intended). Trying to hear guests or coworkers when they try to speak to me is impossible. Is this normal, and/or will it get better with time? I thought, if anything, the overall volume level of the world would’ve been turned down losing half my hearing.

10 Comments
2024/11/01
15:06 UTC

1

Taking a shower with BAHA

Hi, Today marks one week since my surgery. They removed the plastic cover and I can take my shower. However, should I be scared of it? There’s still blood visible.

6 Comments
2024/10/31
23:12 UTC

1

What is "nerve loss"?

I can't really afford more doctors and audiologist appointments. Hopefully someone can chime in and point me in the right direction, because I have never been satisfied with understanding my diagnosis.

A year ago I had a head injury with the impact taking place on my left ear. I instantly lost my hearing and have severe hearing loss in that ear. I can post a pic of my results if thats helpful, but it is a pretty weird distribution. Normal hearing to low hearing loss in low frequencies, severe in mid to highs, then normal to low hearing loss in the high end of highs.

I hear frequencies differently in my left ear compared to my right. Voices sound higher pitched and nasally. I get a very intense ear pressure sensation when I'm not wearing my hearing aid. I've been wearing a hearing aid (Philips 9040) for the past 9 months, and feel like it isn't helping my hearing very much despite multiple visits and adjustments.

I saw an ENT / neurologist for my head injury, and he looked over all of my tests and CT scan. He said that the scan looks fine, and I'm dealing with "nerve loss" in the ear. I interpreted this to be sensoneural hearing loss. However, after doing some reading, I'm wondering if it's retrocochlear hearing loss. Does anyone have any thoughts or similar experiences? It seems like hearing loss due to a traumatic injury is pretty uncommon.

3 Comments
2024/10/31
15:09 UTC

8

6 month old SSD

Hello All,

We recently had an mri for my 6month old and we found out she has incomplete partition of cochlear and absence of the vestibular and cochlear nerves on the right side. From what I understand she is not a candidate for cochlear implant.

This has been very heartbreaking news for us and I just want to know if anyone has similar diagnosis and how are they coping, we have started bi weekly appointments with speech pathologist.

12 Comments
2024/10/31
14:41 UTC

1

Posterior superior pinhole TM perforation - can this cause low frequency hearing loss and pressure imbalance?

My ENT's diagnosis states:

'Right ear examination did show a small pinhole perforation in the posterior superior part of his tympanic membrane, and I have had a look under the microscope which does appear a well established small perforation with a normal appearance of mid-ear mucosa, with a tiny pinhole what I could see. I could not see any obvious glue ear or middle ear pathology, as such. He did demonstrate with the Valsalva that he did have some noises every time he did the Valsalva in his right ear which will be an escape of air from middle ear through pin hole perforation. Considering that he has some degree of hearing loss, it could well be sudden onset sensorineural hearing loss.'

After a course of prednisone, and in the middle of a course of amoxicillin, does this sound like something which will heal itself over time? Or is this my new normal? :(

1 Comment
2024/10/31
14:35 UTC

3

Reddit AMA on acoustic neuromas and inner ear concerns, Tuesday, Dec. 3 at 11am ET

Hi, the ENT team at Mayo Clinic in Florida is trying to spread awareness and address topics related to acoustic neuroma care. A large percentage of individuals with acoustic neuromas develop one-sided hearing loss. One of our neurotologists, Dr. Breen, will host a Reddit AMA on Tuesday, December 3 at 11am ET. We would like to share the AMA link in case your group members are interested and would like to submit any questions: https://www.reddit.com/r/IAmA/comments/1gfwa14/hello\_reddit\_im\_dr\_joseph\_breen\_a\_neurotologist/. Please do not hesitate to reach out with any questions or comments. Thank you for your time!

https://preview.redd.it/9gacndw9k3yd1.jpg?width=719&format=pjpg&auto=webp&s=4277158cfe15a4c124405fddab24cf721df0c620

2 Comments
2024/10/31
13:51 UTC

3

HHSL 3 weeks :(

I had my first symptoms on 8th October which occurred with blocked ears, ringing, completely deafness and vertigo.

I saw my doctor next day which they assume was wax, so I spent the next week using olive oil. The wax gone more than a week. The ringing, blocked ear didn't though.

I saw them again they checked my ear said it's all clear then they told me to go to the audiologist. I messaged them and they replied telling me to go to the A&e and the A&e doctor told me I have an infection in my ear canal. I didn't believe him because I was seen by the previous doctor two days ago.

Now, today I found out about SSHL and mentioned it to my doctor which they rang the ENT and the ENT told them to give me prednisolone pills. After 3 weeks, which I don't have any hope to regain my hearing because I'm also partially deaf in my right as I'm completely deaf in my left, my right ear is my saving grace until this happened.

What the chances of recovering any hearing? I cannot hear anything with my hearing aid. 😔

14 Comments
2024/10/31
12:23 UTC

1

Perforated ear drum, possible SSHL - question about in-ear headphones

This is going to sound ridiculous - but when I wear my earphones the correct way, I simply can't register bass frequencies in my bad ear with a perforation. However, if I flip it upside down, I can absolutely hear bass frequencies as if my ear was perfectly healthy again.

https://preview.redd.it/xfkl1yuor2yd1.jpg?width=2316&format=pjpg&auto=webp&s=839e342163940393ef15626d5111344ed5fda486

It has been this way for roughly 3 weeks now. I've tried prednisolone, sudafed, amoxcillin, and mometasone furoate. While reducing swelling and flem build up, it didn't really help my hearing much.

I'm talking about wired apple earphones. It's absolutely bizarre but nice to know I can still register low frequencies. What does this mean? Is it related to the unhealed perforated area of the eardrum? Is there a chance once the perforation heals, my hearing returns to normal?

3 Comments
2024/10/31
11:12 UTC

5

BAHA abutment & hair

I recently got my BAHA and I'm very happy with it overall. I would just like some advice about how to get rid of the hairs that grow right next to the abutment (I keep the surrounding area shaved already), as they can get stuck underneath the BAHA and get pulled out.

Thank you! (:

3 Comments
2024/10/31
09:29 UTC

1

Ear pressure, prednisone

I've had tinnitus for years, along with times when my ear pressure feels off and have to pop them It's gotten a little worse over the last couple of months and I thought it was probably impacted ear wax. I finally saw an ENT to get them cleaned out, but instead find that ears are clean and after a hearing test I've got some loss in both ears. The left has been the worse, feeling full and slightly muffled. Dr said it wasn't Eustachian tube dysfunction either, but the feeling of fullness is due to my brain interpreting the loss as physical. Has anyone ever had the same diagnosis?

Since I've not had a hearing test before to compare, she suggested that if it's SSHL that a course of prednisone may help (50-50 chance). But since it's not really a sudden problem, just an issue that's gotten worse recently, it most likely is not SSHL. I was prescribed 60mg for 70 days with a 7 day taper. Reading the side effects of prednisone and me having anxiety and panic disorder already, I'm very hesitant. Any kind of strong stimulant sends my anxiety through the roof. Ear fullness is already freaking me out and I'm scared to even take it at all.

4 Comments
2024/10/31
02:33 UTC

7

Anyone tried the Airpods Pro 2 Hearing Aid function yet?

I have the Airpods Pro 2 but the new Hearing Aid functionality is not available where I live. Curious if any fellow SSD people have used them. Can they filter left sounds to the right or vice versa?

14 Comments
2024/10/30
00:03 UTC

5

Hearing aid vs Cochlear Implant

Severe/profound loss on left side, with 0% speech recognition. Tried steroids (IT x 4, oral a few times for 14-30 days), anakinra trial, have only seen steady declines. ENT has recommended cochlear implant, and I was all psyched up to get one ... and then I did my CI eval today (basically they fit you with a hearing aid to be able to show the insurance "no, hearing aid doesn't really help" to justify the cost of the CI). To my surprise (and the audiologists), my speech recognition improved with the hearing aid, I was in the 28-33% range. It didn't sound great, but I could understand way more than I expected (was expecting hearing aid to just make the muffled voices louder). So now I have to choose - do I just take a hearing aid (30% recognition, but no surgery, implant, damage to ear, etc.) or go full CI (60-80% recognition)?

Has anyone been in this situation? What did you choose and why? Do you regret it?

[FWIW, this topic is posted often on the Cochlear Implant sub, but I'd like to hear experiences from folks here given pretty much every response on that sub is "CI changed my life, no regrets, wish I'd done it sooner" and while I believe them, I think there may be some sampling bias occurring]

3 Comments
2024/10/29
20:23 UTC

7

Subtitles on smart glasses, but actually useful for DHH people (AirCaps)

We're a tiny team of 2 that is trying to make smart glasses for people with hearing loss - but ones that are ACTUALLY USEFUL for the d/Deaf & HoH community! You can see them at www.aircaps.com

We've personally tried almost every single smart glasses product over the course of years (XRAI, Xander, HearView, Leion, Epson, Sony, etc.). What we've realized is that these devices have so much potential for the hearing loss community, but the people developing them usually don't think deeply about how to make them actually useful for d/Deaf & HoH users. They don't involve the community in the design process - most are just adapting existing general consumer products for this use case, rather than designing the product from the ground up with d/Deaf & HoH needs in mind.

We wanted to do something because of personal experiences with family members and close friends. So we decided to develop a product that makes some tradeoffs on the "general consumer" front, but is actually tailored for the people who will use it.

Based on talking to over 500 people in the community across 5 different countries (and our own experiences trying out glasses in Broadway & movie theaters and tech conferences), here's what we thought was the priority:

  1. Designed by the DHH community, for the DHH community (outsider "technologists" will never know what the lived experience is like)
  2. Full, unfiltered, and truly equal access. This means accuracy as CLOSE to 100% (95% as claimed by many companies is not going to cut it). Also, no censoring (this is what HearView does), or other filtering.
  3. Comfort, comfort, comfort. The Sony and Epson glasses on Broadway & in movie theaters are UNBEARABLE. Same with XReal glasses. We couldn't wear them for more than 10 minutes without headaches, pain around the nose, behind the ear. So we made a tradeoff - our glasses max out at 36 grams because comfort is paramount, rather than packing in high-res screens for gaming.
  4. Aesthetically appealing (aka, no "glasshole" appearance). We're not saying that people should "hide" their assistive technology (we actually think the opposite). But at the same time, that doesn't mean you should look like a complete dork when wearing a clunky headset (just look at pictures of the XRAI One glasses or the Leion Hey glasses and you'll know what we mean). We’ve had a few users say AirCaps look like designer glasses. 
  5. Convenience. You shouldn't have to go out of your way to use a product that gives you equal access. That means no dealing with cables connected to your phone & draining your phone's battery like the XReal glasses. That also means having a battery life of more than 2 hours - our glasses last the entire day so you don't have to constantly recharge. This also means being able to use the product when you don’t have an internet connection - we have both an online and offline mode for captions
  6. Specific features tailored to the use-case. No other product to our knowledge has real-time speaker separation - we can do this. Not only that, you can register voice profiles for each person you speak to based on just 10 seconds of audio and it will recognize and label that speaker. And, you can hide your own speech so you don't see redundant captions of what you are saying (unless you want that!). And you know how every speech recognition software messes up on proper nouns, names and technical terminology? Well, you can add custom vocabulary to our speech recognition to make sure it correctly recognizes these words. How did we know to add this stuff? We actually TALKED to DHH people in the community and asked them how they would design the product!
  7. Complete privacy. We don’t store audio, transcriptions, or any other personal information ANYWHERE. The audio is immediately discarded after transcription, and you can’t export conversation transcripts. We care about your privacy. And if you think that’s not a big deal, HearView explicitly says in their Privacy Policy that they have the right to sell your information without informing you :)

We're happy to answer literally any question you have. We are also doing live video demos (you can book one on our website). We would love to hear comments about other products / this product / what you think about smart glasses in general - and we're super open to feedback, so if you think we're missing something important, please don't hesitate to tell us!

You can check out demo videos (through the lens) on our website as well as what others who have tried it have said about it. And feel free to DM us or email us (aircaps@aircaps.com)!

TLDR: We're creating subtitle smart glasses specifically for the DHH community, co-designed with input from 500+ people, focusing on high accuracy, comfort, subtle style, convenience, and unique features like multi-speaker identification and custom vocab - features the community actually wants.

5 Comments
2024/10/29
19:58 UTC

2

CROS at Costco yet?

SSHL here. Right side almost totally gone. Damage too bad for conventional hearing aid. Left side is still about 85% (my estimate based on last audiologist hearing test. I like the CROS concept. Are they available at Costco yet?

4 Comments
2024/10/28
22:10 UTC

4

I hear the sounds, but often can't puzzle the words

I'm sure there's a word for this... I have only moderate to severe hearing loss on one side. I still hear in that ear in some frequencies, but overall it's quite distorted and I have just a muffled white noise sensation on that side.

More often than not, at home when my family speaks, I hear they are talking and make out most of the words, but I can't process the sentence as a whole unless I ask them to repeat it with my full focus. Is this lack of binaural squelch, or something else?

10 Comments
2024/10/28
08:01 UTC

3

Pressure

Has anybody you know or have you ever had a condition where you had so much pressure in one ear and could not get the pressure out you can feel and hear throbbing in it and it just keeps getting worse and worse they want to put a tube in my ear but they say that there's a 40% chance that it won't work does anybody know any other options or experiencing anything like this thank you

2 Comments
2024/10/28
00:06 UTC

21

Re-finding music with one ear

I just hit an important milestone in my post surgery (for a Vestibular Schwannoma aka Acoustic Neuroma) recovery and I wanted to share. it's better news than I expected. And it's about music...

The benign tumor in my middle ear on the left side was removed three weeks ago. It's all gone now but it was wrapped up in my cochlear nerve and so now the hearing on that side is gone for good. This made me very sad and very concerned about how I would feel listening to music. Up till yesterdat I've been hearing (not listening to) music only very passively and letting my wife play whatever. Just scared that it wouldn't sound right....

Well I finally took the time to move my main speakers to the right side of the sweet spot in my favorite listening room. I adjusted the angles, spacing and even the balance. It took more than an hour and listened to side C of Electric Ladyland 5 times in a row. It definitely sounds different but I discovered that while it's not stereo (obviously), I can find a "depth of field" in the sound that can trick my brain and even lets me find some new sounds on a record I know very deeply.

I can't begin to express what a relief this is. Music and sound are extremely important to me. The thought of losing the richness of that had me scared. Even though it's not the same, it's different in a way that I'm now looking forward to exploring!

Hopefully this helps others in my situation feel more hopeful if listening closely to music is important to you, as it is to me.

9 Comments
2024/10/27
19:15 UTC

3

Anyone else with intermittent hearing loss an no symptoms in between?

Most accounts I've read here of others with intermittent hearing loss or who have recovered their hearing say that they recovered 80-90% or that they still experience tinnitus, and my doctor has said the same of other patients who got their hearing back or have Meniere's or similar. Does anyone else have 0 hearing loss symptoms when they're not having an episode? If so, do you know what the cause of your hearing loss is?

The first episode I had lasted about 5 weeks, then I had a year and a half of no symptoms, an episode that lasted like 3 days, 6 months of no symptoms, and then an episode that lasted a month.

Edit: sorry title should say and, not an

3 Comments
2024/10/26
01:22 UTC

5

Can hearing come back?

Hi everyone! I've (30F) had profound hearing loss in my left ear for as long as I can remember (congenital, maybe) and normal on my right ear. I had an audiologist when I was 16. He had me get ITC hearing aids, but I did not feel like it was working after 5 years of trying. He still tried to sell me the hearing aids by saying it's an "upgraded" version. Whenever he spoke to me, it sounded like he was mocking and bringing me down so that I'll follow his instructions. I had bad self-esteem because it made me feel like having hearing loss was something I could have changed, and that my ear was getting lazier and lazier.

I met him again at a luncheon I was organizing this week. He said these things in order:

  • "Why don't you come back for another hearing test?

  • (I ask if vibrotactile responses are considered as "yes, I can hear this") He said my problem is not that, and that doesn't matter. It's how I hear the speech that's the issue.

  • "The problem is your ear is becoming lazy."

  • "You can only hear because of your [good] ear."

  • "It needs [hearing aids] to retrain the ear to hear."

It's a strange feeling, hearing these same words that made me so guilty I failed when I was younger... And then not getting THAT upset as an adult. I was just curious what people thought about "hearing loss gets better". I thought this was something that cannot be reversed? It's become a part of me that I'm no longer ashamed of and I don't want to do anything about it anymore (basically letting it be).

5 Comments
2024/10/25
15:20 UTC

5

How can I use Shokz (bone conducting headphones) to help my hearing?

I've just received my pair of Shokz after seeing the recommended on here and I'm pleased to say they are comfortable to wear and I can hear music as expected (a little diminished in my bad side as with normal headphones). But how can I use them with my phone for enhancing dialogue in the room, or work calls maybe?

9 Comments
2024/10/25
10:46 UTC

6

SSD and thinking about going on the cochlear implant journey

Had SSD for almost 15 years. I’m early 40s and it is getting hard to only utilize my super left ear. I’m eligible for a cochlear implant and am really confused on how to decide which device to go with. I am very concerned that I may not like an implant and then what? Would appreciate any help with guiding me how to move forward. Also are there any miracle breakthroughs anyone sees on the horizon? Curious about the latest promising experimental therapies. Thanks

10 Comments
2024/10/23
05:02 UTC

29

Reminder for Single Side Deafs in London: we get *free* travel

We are eligible for a disabled persons travel card which gets you free travel on the TfL network! Tubes trains and buses within London at all times.

Additionally free travel on ANY local bus in the UK after 9.30am.

You have to apply to your local council, check https://www.londoncouncils.gov.uk/services/freedom-pass for more info

8 Comments
2024/10/22
08:28 UTC

8

Strategies for loud environments?

So Im about two weeks into the monohearing life at 50 years old. Surgery for a vestibular schwannoma (aka Acoustic Neuroma) caused me to lose all hearing in my left ear. Recovery is moving along slowly but steadily. This weekend, I went to a football game with a few friends and have some questions.

First, I'll say that I totally expected to be overwhelmed and exhausted due to the recent surgery and the energy I have to put in to balancing and healing. But, the sound situation was really overwhelming and I didn't expect that.

I set my friends up all to sit on my hearing side so talking with them was really not much harder than it used to be at a loud event. If I wasn't paying attention, I didn't know what was being said between them, but that's normal for me in a loud environment and It's not like I was trying to have a deep conversation anwway. But the noise at the event (mostly the music in between plays) was a lot. The sound quality was extremely bright and tinny, very mushy and just too much. Also, my deaf ear was trying to compensate by turning the ringing up. It was really annoying.

I'm a person who likes to go see live music and am hoping that those of you who have lost hearing in one ear later in life have some strategies for making the sound A) more bearable and B) sound better.

I am planning to try out and maybe get a BAHA once healing is further along. Will that be helpful? Anything I should ask my doctor about w/r/t that (brand, model, features, anything)?

Any specific product advice for other items I should try? I'm gonna look for a higher quality ear plug that will dampen things (more than just cheap-o foam) so preferred types would be welcome. Or anything else that works for you?

Thanks!

19 Comments
2024/10/22
00:06 UTC

20

New AirPods Pro 2 have a hearing test and act as over the counter hearing aids

The new Airpod pro 2 looks like it may be worth taking a look at . I wish android did more things like this

Article HERE

14 Comments
2024/10/21
11:12 UTC

3

Has anyone had lasting results from HBOT for SSHL

Just got SSHL last week. Have intense pressure, tinnitus and near deafness in one ear. Doing steroid shots and HBOT. Having a hard time with the HBOT so wondering if it’s worth it. This is all scary and depressing.

11 Comments
2024/10/20
02:39 UTC

6

Diagnosed with SSHL back in March but curious if this is normal?

I was diagnosed with SSHL and have dealt with it since March. But I have had eustachian tube dysfunction for maybe 8-10 years before this happened. My ears would always pop and the tubes would be open and I would have to breathe through my nose quickly and hard to get them to close back. Now with SSHL, I can hear louder out of my bad ear than with it closed. Also with a headphone in or with a speaker pressed up to my face right underneath my ear I can hear pretty loudly. Anyone else deal with this?

4 Comments
2024/10/19
22:37 UTC

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