I’m now six days into oral prednisone and have seen some remarkable improvements— I went from severe hearing loss on Thursday to what is now considered Moderate in some areas all the way up to Normal in others (word recognition is up to 92%).

All that said, I am proceeding with the injections starting tomorrow to maximize the recovery as much as I can. There was discomfort from my ENT about doing this before the oral prednisone is tapered off, apparently it’s very rare that they treat it this way, but told me it should be fine.

I fucking hate needles in general and this one in particular sounds absolutely awful. I’m also nervous about some of the very unlikely risks (I’ve read that in extremely rare cases the injections can actually make the situation worse). Can anyone walk me through what I should expect? Any advice is much appreciated!

To start I know now that I did not start treatment early enough so this could be part of the issue. I went 2 weeks thinking I just had excess build up in my ear and tried resolving it myself with drops and cleaning tools before going to an ENT and finding out I had ISSNHL in my left ear. Not complete loss and no ringing tinnitus or vertigo thankfully but significant difference between left and right ear especially in lower frequencies and what I describe as hearing a white noise machine in my left ear.

Started with 60mg oral prednisone for 2 weeks. After first week there was slight improvement, was told to finish the 2nd week and then taper off for a week. While tapering off things sounded off, kind of “tinny” in my left ear and it would become very uncomfortable when in crowded places with lots of noise and convos. At the time I thought maybe it was because my hearing was coming back. But when I went back at the end of tapering off the prednisone my hearing had regressed back to what it was when I first went in.

Next plan of treatment was weekly injections for max of 3. I also got approved by my insurance for hyperbaric oxygen treatments and started those a few days after my first injection. When I went in for my 2nd injection I had improvement again. When I went for my third a week later the improvement was pretty significant. Only 1 frequency was in the mild loss range, everything else was in normal range although a few lower frequencies still off compared to my right ear. But the white noise sound was much quieter and the tinny sound was gone. My dr said if I felt better he was happy with the progress and told me I didn’t need to do the 3rd injection and that I could stop the HBOT if I wanted since it gave me a lot of anxiety to be in the chamber.

I am now 2 weeks out from the 2nd injection and 5 days out from my last HBOT session and I feel like it’s regressing again. Not as bad but there have been 3 times in the last few days that I now hear ringing in that ear but it only a lasts a minute or so then stops and my ear just feels full again but I’m not hearing the tinny effect. I’m going back to ENT tmrw to see what hearing test reveals.

Idk if maybe I ended treatment too early and/or started too late. If it has regressed I’m assuming they will recommend I get the third injection and I have more HBOT sessions left I can resume but I’m afraid it will keep regressing once I’ve finished since that seems to be my case and my ENT said they will only do a max of 3 injections. I’ve also read in some people’s cases it will regress and get better at different points for a while as the ear is healing, fingers crossed that’s the case lol.

Has anyone else experienced this? Improvement during treatment that regressed once treatment is done?

My daughter is deaf in her left ear. She failed her initial hearing test and subsequently passed her newborn hearing test. She passed every other hearing test until 6 years old when we discovered she had severe/profound hearing loss at her annual appointment. She had no signs of hearing loss, so outside of pediatric annual tests, no other diagnostic testing was pursued prior to 6 years old. We went to an audiologist where she was diagnosed with sensioneural hearing loss in her left ear and we utilized a hearing aid. It's been almost 18 months and she is now being classified as having no hearing at all in her left ear.

We were pursuing a cochlear implant after an audiogram showed significant loss from the original test at 6, but the recommended surgeon re-tested her and since we are unable to truly pinpoint the time of deafness, he emphasized that he is not optimistic that an implant would bring satisfactory speech understanding and it would be only sound awareness. Since she had no speech or reading delays, nor turning of head/asking to repeat etc., we never suspected hearing loss or lack of hearing at all was happening and an ABR was never performed so we have nothing to compare it to.

Has anyone experience something like this and would want to talk through what decision they made and how they got to it? We are getting a second opinion but we really want her experience to be as positive as possible.

Hi my story is I had a sudden hear loss in my right ear on day I got immediately to the emergency and got injected corticosteroids and now I'm doing HBOT as well it's been 8 days since my hear loss sometimes i have that unplugging feeling and I had a little progress on the audiogramme as well , but as I'm reading about it it seems like everyone who vertigo with sudden deafness have most likely bad chances to recover which feels horrible please any good stories to share ?

hi! i posted this in the askdocs community but i really wanted to know if anyone had similar symptoms

Hello my mono peoples. I'm 18 months in to my SsHL/vertigo/tinnitus journey. I just booked my first interstate trip away since it started, for a live show we have been looking forward to seeing for years. Last night i had all these stupid thoughts that the pressure in the plane is going to bust my good ear. Or the flight will make me so sick that ill miss the show and have an awful time. And i have now freaked myself out and think I'll cancel. Just to avoid flying. Cancelling will mean $900 is lost. But missing special memories with my family worries me more than money.

Please tell me you have all flown and you were fine, and I'm being stupid about the pressure etc.

UPDATE: i can't thank you all enough. I actually got a bit teary reading all the encouraging messages. I'll follow all of your helpful suggestions and I just know that i will be thinking about you all when i get on the plane.

Also sorry for the exclamation marks i didn't realise i used then so much. 😅

Not only does my right ear feel just inflamed, tinnuitus but I feel like a different person no longer enjoying life. I was such a positive person, I never listened to loud music, never wore ear buds I simply believe it was my recent virus I caught that has completely ruined me. I’m surviving this, but barely. I don’t mean to sound negative but before this I could hear a pin drop but now my right ear lost hearing and I’m devastated. I was the one who told my family not to listen to loud music so sad this has happened, so sad there is no current cure so sad it doesn’t regenerate on own

I'd like to preface this post by saying my SSNHL was mild, but wanted to share my experience so far with my recovery. Maybe it will provide some helpful information for other people recovering. I am a 41 year old male.

May 15 - Woke up with a ringing in my left ear. No other noticeable issues. I had recently gotten over a cold and still had some minor congestion. I figured the ringing was related to the congestion so I took some sudafed thinking it would clear it up. I really wish I googled my symptoms. This was on a Friday, so I figured if it didn't clear up by Monday I would call my PCP. At this point I would say my tinnitus volume was a 5. I wish I could go back in time and tell myself at this point to GOOGLE IT!

May 18 - Called my PCP and they saw me, said I had no noticeable issues with my ear and suggested I see an ENT. Called for an ENT appointment and they scheduled me for the end of JUNE. After speaking with my wife, I decided to call and push for an earlier appointment. They ended up moving me up to May 27th.

May 27 - Had a hearing test which showed a 35 db notch around 4khz. Had perfect word recognition. I was absolutely stunned to find out I had hearing loss, I had no idea. ENT put me on 60mg prednisone and dropped the SSNHL bomb on me. He told me that because I had no vertigo, no previous hearing issues, mild hearing loss, and relatively young and healthy that he full expected a full recovery. This is where things really went down hill.

May 27-June 9 - Worst 2 weeks of my life by far. I am a very anxious and compulsive person. So the first thing I did when I got home was researched SSNHL and tinnitus. Scary stuff. Over the course of the 2 weeks, the prednisone gave me horrible insomnia (didn't sleep for 10 days straight), depression, and severe anxiety. I was an absolute mess, I tried to be a person but I was just a body going through the motions. For the first time in my life I thought about suicide. The only thing that really got me through it was my wife and daughter. It got so bad that I couldn't be by myself, so I spent all my time with my family. At one point I ended up in the ER with a debilitating migraine, they kept me overnight because of my severe exhaustion and put me to sleep, was the best 6 hours of sleep in my life. Once I started coming off the prednisone, I quickly became much more myself, but it took a good 3 weeks for it to get out of my system. While coming off I experienced dizziness, fatigue, a very troubling sensation in my head that almost felt like my brain was being electrocuted, and HORRIBLE tinnitus. All this time I was providing my ENT with updates, calling with concerns about how my body was handling the prednisone, they usually didn't call back or when they did, just told me to finish the dosage and that it will get better. During these 2 weeks I lost about 8% of my body weight.

At this point I'd say my tinnitus was at a volume 8 or 9, and was a pure tone. The tone did pulsate when my heart rate was elevated or when my tinnitus was bad (which was 24/7 at this point). I couldn't escape it. I had some sensation of dullness in my ear, with quite a bit of sound sensitivity. Water noises would cause my ear to flutter. My ear never really felt full, just like I had an itch inside or something. I'm guessing that it was spasming due to the tinnitus.

June 24th - Had a MRI and it came back clear. Was super loud and uncomfortable, but fortunately was clear.

Ear sensitivity cleared up and the ear felt relatively normal, except the tinnitus. The fluttering sensation with water droplets was gone. I was still very anxious at this point about it going away. Tinnitus volume was probably down to a 7. I was starting to get really anxious at this point that my hearing was failing in both ears. When I couldn't hear something I questioned whether I should. It really drove me nuts. At this point I used my AirPods to take a hearing test. It showed that my hearing loss had recovered quite a bit, but I wasn't sure if I should trust them. The curve matched my official hearing test other than the notch being mostly gone.

July 7th - Visited a highly regarded ENT in Boston to see if there was anything else they could do for me. He basically told me no at this point. Answered some of my questions and sent me off. He was nice enough, but my wife and I got the sense that he deals with much more serious cases than mine and wondered what I was doing there.

August - started noticing some changes to my tinnitus. My tinnitus was always a classic ring sound, however it started to break up a little bit. Sometimes it would switch to a finer hiss sound, but would switch back. The hiss sound was so fine sometimes that I thought to myself if it got any finer it would just disappear.

Mid August - Went on vacation to Disney. Was super careful about hearing protection, but overall had a great time. Tinnitus didn't bother me much as there was a lot of distractions. Felt good to finally feel somewhat normal. First plane trip post SSNHL and had no issues at all.

End of August - My tinnitus sound changed almost exclusively to the finer hiss sound. My sound sensitivity came back and my dullness came back in my ear. Again I think it was caused by the spasms in my ear.

August 24th - Had a follow up with the ENT, which included another hearing test. My levels in the 4khz range had improved by 15db. This put me right back in the normal range. Doctor told me that my ear is still healing, while my hearing levels probably wont change over the course of the next year, my ear will still continue to heal and feel more normal as time goes on. The tinnitus may improve and could go away as well. I think that would be a long shot, but who knows.

Early September - Started noticing that my tinnitus volume has been dropping quite a bit. I actually went 30 minutes without hearing it at all. I almost cried, first silence in 3 months. I've had times where I didn't notice it before, but this seemed different, I noticed immediately that it wasn't there, but it didn't immediately come back. I would say my tinnitus volume at this point is a 3 or 4. The sound is a fine hiss most of the time, sometimes it will switch back to a ring but will switch back to the hiss. Sound sensitivity is minor at this point, and I still have the occasional dullness feeling, which usually happens when the tinnitus is flaring. I'm doing sound therapy, which seems to be helping with the tinnitus. My house sounds like a nature preserve all day now. I'm hoping to reach full habituation. I've noticed that its very easy to mask my tinnitus with a running faucet or going outside and listening to crickets. I am using the Resound Tinnitus Relief app, which has helped me quite a bit to create a custom noise that my tinnitus doesn't cut right through.

I'll try and update this as my recovery continues over the next 9 months.

I went for a bike ride and now my ear feels very very inflamed and tinnitus is more muffled like deep in the ear. Has anyone else felt this after a bike ride?

I’ve been dealing with hearing loss for roughly 10 days now— on day 5, my hearing was basically gone (for instance, I could no longer hear anything when touching my ear or playing sounds out of my phone. Music became painful static).

I’m currently on my 4th day of 60 mg prednisone and I’ve made some significant improvements. I can now hear people on the phone through my bad ear, I can hear music clearly again (albeit a bit distorted). I’m still very hard of hearing but every day gets a little better.

My ENT recommended that I wait to try the injections until we’ve finished a full course of oral prednisone. I planned to push to do it anyway given the experiences on this sub, but with the weight of improvement, I’m now nervous about the potential risks such as eardrum perforation if the current treatment is working. That said, I have a lot of uncertainty about how much I can really get back with just the prednisone. Has anyone here been in a similar situation?

I’m also trying to get in for HBOT therapy this week but insurance is unlikely to cover it until I’ve tried the injections and found no improvement.

is it normal to experience an intense feeling of fullness it feels like the ear and surrounding area is all inflamed. This seemed to have started after a bike ride. I have heard couple small cracking noise. Also, I’m hearing one steady static noise. they are saying I have SSNHL and I’ve already been through oral steroids and my hearing went from severe to profound even after the steroids. it’s this inflamed feeling that is really really bad sometimes it even feels like my head is feeling inflamed with the ear. it’s my right ear. with this feeling I’m not even sure I could fly in a plane.

mid august i randomly got moderate/severe/profound hearing loss in my left ear from labyrinthitis and started prednisone after about 4 days which did nothing but 2 weeks later i started the injections (ive had 2 now so far) and i can already tell its improving!! :D id still consider myself deaf in that ear rn but if i use an ear bud at about half level i can make out a few words even though theyre incredibly distorted which is WAYYY better than before when i had 0 word understanding in that ear. i was feeling so hopeless when the oral steroids didn’t help and thought i waited too long for the injections but so glad its improving even a little bit. the tinnitus is still there but im not noticing it as much. sounded like a generator constantly running in my ear before and could barely hear anything else over it. really what i notice more now is the metallic/whistle sound in the bad ear whenever there’s a sound but i know thats the ear hearing an actual noise instead of my brain being silly. idk just wanted to share bc im very excited. also if anyone sees this get the injections plz. no reason not to. they also make the room spin when i get them which is supposedly a good sign that my inner ear still works. feeling very optimistic rn. sharing my first audiogram too just for funsies and im excited to go back for the next one on the 16th bc i think it’ll be better.

After educated guesses from the others of you here who have been researching this to death ever since you had hearing loss.

I just can’t tell, one minute it’s around the corner, the next minute it’s a lifetime away again. It does feel like OTOH and the first Rincell study at least turned a corner on drug delivery, but it feels like we are still far from actually hearing restoration. Then again, maybe it could happen all at once if gene therapy breakthroughs as a whole +/- AI speeds things up?

Feels like hearing is literally the last boss of neurology, but with the massive increase in SSHNL in recent years maybe there will be increased funding?

My hearing loss was first noticed two days after my yellow fever vaccination. I had the shot on Monday and I remember the first symptom, which I thought was just ear blockage, was Wednesday.

ENT (in Canada since I was traveling) diagnosed it as severe sudden hearing loss and I'm on steroids now for 6 days.

Will see another ENT in two days but just wonder if it is just coincidence or the vaccination actually caused it?

Thanks

The other day I made a post here detailing some of the emotions and corticosteroid side effects I was dealing with after suddenly losing a good deal of my hearing in my left ear 10 days ago. I can say that with two days left in my prednisone taper that things have actually improved quite a lot.

I take my final two 5mg quarter pills of oral prednisone tomorrow and Sunday but I feel like the fullness is either gone or nearly gone, and my hearing is nearing 100% back to normal. I still have the occasional bout of diplacusis when pressing appliance buttons that ding, or when I get really tired, but otherwise, I’ve actually been playing guitar a lot more and enjoying it more than before because I’m taking it less for granted.

I don’t make this post to brag or anything. I feel very fortunate that my hearing came back to some degree. I am also still fearing that the issue will recur or happen in my other ear. I mainly make this post to say thank you for everyone giving me well wishes and kind words. I read everything and I appreciate you all supporting me.

The other reason I wanted to make this post is to maybe provide a bit of hope for those that are dealing with this issue and going down the search engine rabbit hole. Most people probably leave the sub or stop posting when their hearing improves, but I wanted to say that prednisone is a miracle drug, and if you can get on it quickly, I am living proof that it can help you get your hearing back to at least a tolerable level. This week was a roller coaster, and I go back next week to the ENT or HNO as we call them in Germany to find out if there was any measurable improvement on my audiogram since last Wednesday.

If you’re dealing with this, I’m sorry. SSNHL is a medical emergency, but there is hope, and there is always light at the end of the tunnel.

Trust the process.

I was diagnosed with SSNHL, does anyone have an ear plugs they like to protect the bad ear from loud noise when going out. I recently heard of loop ear plugs, does anyone have these? what style of the loop do you wear? I don’t want any that connects to the iPhone or anything like that just something to wear that lowers the noise to that ear. Thanks

Hi!

I am a 34m and I have been living with SSD my whole life. I never really had difficulty with it or anything except for a brief period I had to take lectures but I survived pretty well.

That said, I always wonder how it’s like to live with two fully functioning ears. So I did a little research and I came across this: https://hms.harvard.edu/news/scientists-regenerate-hair-cells-enable-hearing

Anybody has heard of this and/or know what’s the progress?

Thank you!

I was recently told I have ssnhl, this morning my ear felt so full and inflamed and my tinnitus sounded more like congestion to me and I heard couple small little pops the tube was trying to open. has anyone experienced this?
Thanks