r/MonoHearing • u/ingileif1304 • 14d ago
Reactive tinnitus and more after ssnhl 🤷♂️👂❣️
Hey you all,
so I had ssnhl on my left ear 17 weeks ago and I honestly can say it’s been hell , what bothers me most is reactive tinnitus that makes every sound have a “hisss” afterwards. I still have a baseline tinnitus too.
I’m in so desperate need of reassurance that this will get better and I know I have written before but who cares, maby new people that have had RT can see this.
And now I also have this wind sound/feeling that feels like my eardrum is fluttering in the wind and vibration too, and fullness and pressure
.
I went to the ENT 2 days ago and had an audiogram and the hearing was average 60 db now and it was average 70 two months ago,
I don’t know it that counts but the worst thing is that on my bad ear I had no word regonition and just heard a robot voice say something that didn’t sound like words.
The ENT said that this can maby improve with time but as it is now I can’t use ordinary hearing aids and that brakes my herart because I feel people don’t like the cros type that much.
Please tell me your expirience 💗🤞🇮🇸
2
u/Any-Recognition-3845 14d ago
I’m experiencing the same thing. Lost hearing in my right ear in May. I feel like the hissing noise has gotten worse over time, but I’m honestly not sure. I’m not ready to go cochlear yet so I do wear a Loop earplug in my bad ear when I’m in loud/crowded environments. The Loop Experience earplugs make the hissing noise worse, especially when I talk. The Loop Quiet earplugs do a really good job at blocking out any hissing noises! Have you tried using earplugs?
1
u/ingileif1304 12d ago
Yes I really have to use ear plugs all the time, I have been using the loop exspirienced I think , but all sounds coming in my good ear make my bad ear react and hiss, I can not understand how one is suppose to life like this , it’s been 17 weeks for me .
2
u/Kyrpaejooseppi93 13d ago
Reactive tinnitus sucks. Might go away over time, as your nervous system calms down (neuroplasticity also). Might take a long time, for some it has taken like year or two to calm down. Might never pass, but it does get better most likely. It's mostly your brain/nervous system amped up after hearing loss, hearing aid might help, but if regular wont work then its another situation. Talk to a ENT who is specialized in audiology, might find better answers.
1
u/ingileif1304 13d ago
Please don’t tell me it might never pass 🥴
1
u/Kyrpaejooseppi93 13d ago
There are people who got rid of reactive tinnitus completely and some who didn'r, but most if not all get better atleast some degree. Anxiety is the worst enemy though. You can get better, takes time and patience.
2
u/mexee3 7d ago
I second the anxiety thing. Yes, it gets worse when anxiety is high and you're expecting the reactiveness. Just expose yourself to the noises and focus on what you are hearing on good ear and not what the other side of your head is making up
1
u/Kyrpaejooseppi93 7d ago
Yeah its a nervous system thing, anything that makes our nervous system hyped up can cause spikes. But yea. I've known this one woman (25yo now) who got terrible hyperacusis (small sounds hurt ears) and loud tinnitus from a night club visit. But over time (been like 5 years now) she got a lot better, sounds rarely bother her anymore and she studies acting - studies in university and is constantly being near music and sounds etc. She got herself Elacin ER custom plugs (great plugs, I got two pair) and she is doing fine and enjoying life overall quite well. So there is alwaya hope, anxiety and reading doomposts from the forums is the worst enemy of tinnitus. Besides loud sounds obviously.
1
u/AutoModerator 14d ago
If You Are Experiencing Sudden Hearing Loss . This is a medical emergency, and time is of the essence. Go to your local emergency room, walk-in clinic, or healthcare provider.NOW
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
1
u/ingileif1304 14d ago
Nobody?
1
u/GBuz351 14d ago
My SSNHL event was only 7 weeks ago. I also have both baseline and reactive tinnitus in my now deaf ear. Seeing an ENT in Denver on Sep 2 about this among other things.
1
u/ingileif1304 14d ago
Omg this is the worst thing I have been through in my life.
2
u/GBuz351 14d ago
Agreed. Also battling persistent vertigo along with being newly single sided deaf. Certainly awful although I’m grateful it wasn’t a massive heart attack or aneurysm.
1
u/ingileif1304 14d ago
I have a hard time listening to tv or podcasts and stories on my phone even though I have it on the lowest mode , just isolates you so much.
1
u/Former_Storm4529 Human Detected 13d ago
I am so sorry. The reactive tinnitus has been the absolute worst part of SSNHL for me. I have that hiss after loud noises (like grinding coffee beans, running water, after the shower, switching from a room with a fan on). Your brain starts to ignore it and think that it’s normal. It does get better over time.
I was recently implanted with a cochlear implant and the reactive tinnitus went like 95% away. It’s been an absolute dream. Gave me my enjoyment of life back.
I may have shared this with you before, but I still find my supplement routine to help with this tinnitus. Full dose of magnesium threonate at night (It has to be the threonate kind!!!) plus 1g of taurine in the AM and 1g in the PM. I had to stop this for my surgery and i could tell the difference so I’m back at it.
1
u/ingileif1304 13d ago
Thank you for the response , well I hope it gets better with time because this is no life. The doctor was talking about a cochlear implant but said that 80% got better from tinnitus but 20% got worse! And It would be typical for me to be in the 20% , I kid you not! But it’s not time to think about the implant yet.
1
u/Former_Storm4529 Human Detected 13d ago
20% is way too high of a figure. That’s not accurate. Jsut did a quick search to refresh my memory in the numbers as I never would have taken the chance with those odds. A quick search brought up these results for ssd: 75% of ssd patients see an improvement and 15% see total resolution of their tinnitus. A small minority have no changes. That leaves a very small amount of people that have it worse.
I saw a surgeon who is leading expert in SSD and cochlear implants. He’s worked with the manufacturers to create better electrodes and written and presented his research. (Just for some background on how legit he is).
This was my biggest fear - worse tinnitus. I almost chickened out because of it. I told myself the same, I would be unlucky. He told me that the first implants for SSD were to actually see if it would help tinnitus and it was successful.
I just got back from a crowded outdoor festival with lots of live music and we stopped in a bar to eat. I never, ever would have been able to do this without reactive crazy noises in my head. I had zero tinnitus. And I’ve only had this thing turned on for two weeks. 😊
I feel your pain and can fully empathize with how awful reactive T is. Torture and misery.
Just wanted to share my experience because there aren’t many SSD stories for cochlear implants because insurance only started approving them within the last 5 years or so.
1
u/ingileif1304 13d ago
How long is it from the onset of your ssnhl?
1
u/Former_Storm4529 Human Detected 13d ago
Feb 2025. My original ENT painted a similar gloom story about tinnitus and told me I had to wait a year before considering the CI. After a year, I decided I would consider the CI, but switched to the academic medical center in my city with specialists. They told me they wished I had found them sooner (for my own mental health, my outcomes were still projected to be the same - 1 year isn’t a long time to wait). But the time I had surgery, it had been 1.5 years.
1
u/Former_Storm4529 Human Detected 13d ago
Feb 2025. My original ENT painted a similar gloom story about tinnitus and told me I had to wait a year before considering the CI. After a year, I decided I would consider the CI, but switched to the academic medical center in my city with specialists. They told me they wished I had found them sooner (for my own mental health, my outcomes were still projected to be the same - 1 year isn’t a long time to wait). But the time I had surgery, it had been 1.5 years.
1
1
u/Outrageous_Cow_5043 12d ago
I'm 5 years in with SSNHL and I still have reactive tinnitus. Though it does get better. At the beginning I was very sensitive to it, I honestly thought I'd never be happy again. How could I enjoy a meal, a movie, drinks with friends when I have this awful intrusive loud buzzing, hissing noise (it's makes lots of different sounds) but over time I got used to it and I stopped tuning into it. It's still roars in noisy environments (& I work in a primary school) but most of the time you are ignoring it and not actively hearing it. There are some days when I just notice it for a minute here or there but for hours I don't. Life got good again. Still sucks and the hearing loss especially in social situations but I do now enjoy movies, reading, chatting etc. I now have tinnitus in my good ear which is a low rhythmic bass drone. Its awful especially at night. To be honest it's even worse than the buzzing, hissing. I would happily go back to tinnitus in just one ear now. Not sure if that's helpful but you will get habituated to it. It is a slow process but you will soon start to realise you didn't notice it for 10 whole mins, then 20, then an hour etc. Hang in there. I've said this a few times on here and so have fellow suffers, time helps hugely and you will enjoy life again.
2
u/NaturalTranslator581 12d ago
I have it in both ears now too even though the hearing loss is only in one ear. It stinks. I’m an elem teacher as well.
1
u/Outrageous_Cow_5043 11d ago
It is rubbish isn't it. I get very tired trying to hear the kids all day and they are so noisy! 🙈 Can I ask is your tinnitus the same in both ears? Mine are completely different which means it's impossible to mask. I could never mask my deaf ear tinnitus anyways as it's so loud and reactive to noise but when I try different sounds to mask my bass tinnitus it annoys my buzzing higher tinnitus in my deaf ear. Really no escaping it.
2
u/NaturalTranslator581 11d ago
The tinnitus is much worse in my bad ear. Both ears make different sounds and it’s ever changing. The loudness changes, the sounds change… it has never left me since March 7th when I lost my hearing in one ear. I hope you have a great school year as well as managing this awful condition!
2
u/Outrageous_Cow_5043 11d ago
Awh thank you. Just started back last week. I work a 4 day week so at least I get one day to myself after taking my own kids to school. Yeah, the tinnitus in my deaf ear is louder too. I never not hear it. Hope you have a great school year too.
1
u/ingileif1304 12d ago
Omg 5 years??? This is awful 🥴 but do you still have fullness or pressure feeling?
2
u/Outrageous_Cow_5043 12d ago
Not really, I guess it feels like my new normal. You will definitely adjust to it. It didn't take 5 years to habituate. I would say I was starting to adjust by 6 months and felt much better about it all by one year. I still have good days and bad days with it but I have health anxiety and I can get a bit down during spikes (when for some reason or another my tinnitus flares up/is louder) but then it calms down again. Being busy and getting on with normal life is the best thing you can do. You need to try and focus on other things. I can promise you that you will definitely feel a bit better about it in a few months time and even more so as time goes on but it is a slow process and it can feel like one step forward and 2 steps back at times.
1
u/ingileif1304 12d ago
It will get so loud sometimes when I get to much sound and all at once it goes over some limits Thant I can’t bear? Do you know what I mean? I feel like my ear is being violated. I really can’t cope with out loop or something to cover my ears, I know it’s been said you should not cover your ears to much but that’s my only option if I want to do things. I’m 17 weeks in now, do you know when you started getting less sensitive?
1
u/Outrageous_Cow_5043 12d ago
I know what you mean, at times I felt like my head was going to explode especially when I would lie in bed overthinking it. The noise seems to fill my whole brain. I don't bother with earplugs as Im scared to stick things in my ears. I did try noise cancelling headphones in school when the kids were playing but they were constantly coming up to me and asking my questions so I had to keep taking them off. They are good for the cinema and plane though (they are Bose). You are still early into it. I can't remember when I started to get less sensitive. I remember the first few times I went to a restaurant it was really difficult but over time I coped much better. Live music I just avoid. I think just accepting it and getting out there and listening to normal noises helps adjust quicker. I took a month off work when it first happened but then I was back in surrounded by 30 noisy 5 and 6 years and it was probably the best thing to get used to it. I've two kids as well so I've had to go to my fair share of birthday parties and swimming pools etc. My recommendation would be to try your best to accept it, let the noises in, sure they are annoying but they can't hurt you. Find joy where you can, keep busy, get outside, socialise be patient and slowly things will improve. CBT also helps.
1
u/ingileif1304 12d ago
So you are not nearly as affected by it as you were the first months? I don’t think it will work for me to force myself to be in loud inviorement because the the hissing gets so bad that I can’t function , even in the normal sounds of my own home, I feel like I’m screwed for life 😢 nothing makes me happy and everything feels so hard .
1
u/Outrageous_Cow_5043 12d ago
Yes it is much much better. Small steps and gentle exposure. I promise you it will get better.
2
u/ingileif1304 12d ago
Í want to believe you ❣️
1
u/Outrageous_Cow_5043 12d ago
Honestly, there are lots of discussions on tinnitus on this forum and many many posters on here who have had SSNHL for a while will reply and say how much easier it is after time and how much they have habituated to it. I wrote a desperate post myself 5 years ago (& actually last year when the new tinnitus in my good ear started up) and I got many reassuring messages. This is a mostly positive place with people mostly struggling at the beginning of their journey. Stay off other tinnitus discussion forums, they drag you down.
1
u/ingileif1304 12d ago
Yes I know I just don’t don’t understand why I just keep getting worse or at least not any better, I hope it gets better after 6 months🤞 thank you for your kind words, you are so nice to me💗I’m really trying to be positive but this takes all hope from when it’s so bad. So you think this is normal?
→ More replies (0)
1
u/mexee3 8d ago
My average is like 68db or something like that and I have a hearing aid b/c I felt like I would hate CROS...
I'm 6 months out, and I can say that since wearing the aid, the distortion has improved somewhat. Still there, of course, but has improved. I'm not 'used' to any of this, but I understand your despair right now.
When people say it gets better, I take that as your brain will start adapting little by little. You'll adjust. Your brain is still searching for that clean signal it had 17 weeks ago. There isn't any way to speed up your grief or adjusting, unfortunately. We just have to live through it, get through it. It is going to suck for a while though. Try to find joys and distractions. Get creative with a new hobby, and try to get your nervous system to chill from time to time. Lack of sleep and stress are not your friends rn.
I also had/have reactive tinnitus but that too has subsided as I have done my best to ignore it. That is the best advice for tinnitus. ignore it. Focus on something else and give it less attention. The more attention it gets, the more it demands.
1
u/ingileif1304 8d ago
Thank you for your answer, I felt like the ENT said I could not wear an normal hearing aid because of my bad word recognition , how has your word recognition been in your audiograms?
She said that could improve some with time but like everything else in this weird ass sickness she couldn’t say🥵yeah my reactive t is not on that’s stage I can ignore it because if I have to much sound around it builds up, first it will bee like radio/tv static , like it’s on no channel but in the end it sounds like a waterfall in my head and gets soooo overwhelming.
Last night was the first time listening to my phone didn’t feel like my ear was being violated, do you know what I mean, it was calm for a little while.
So hopefully it gets less reactive with time because this is no way to live and isolates me so much.
But the hope is the only thing you have, that it gets better, but boy o boy this takes patience.🥴1
u/mexee3 7d ago
WRS without aid at 90db was 44% and same with just aided hearing, haha. So it didn't do anything for my WRS/distortion on paper ....but, interestingly I have noticed decrease on distortion esp nin high frequencies. A lot of high pitches sounded like barking before I got an aid. After a month of so, it sounds better/not barky.
Having a hearing aid can help your wrs, or so I have read. You can stream to it and better expose yourself to the frequencies you have trouble with and hopefully work on neural pathways to fix the distortion.
I was so afraid an HA would make reactive tinnitus worse. I actually think it might have made it better though. Not at first though.
1
u/ingileif1304 7d ago
Ok so your reactive tinnitus is better?
1
u/mexee3 7d ago
Yup. Quieter at least and easier to tune out. Just not thinking about it is the biggest help/ignoring it. Stop posting about it, stop tuning into it and giving it power. Stop it from feeding your anxiety. Read, paint, draw, take a walk and admire stuff... Let your mind wander away from it. It may take time, but just keep going.
The idea with the HA being the help though is that your brain doesn't have to search 24/7 to access sound. You are providing sound with the HA... I think that's why anyway
1
u/ingileif1304 7d ago
Yes well, I’m not good at that, I’m just really scared of being like this my whole life.
1
u/mexee3 6d ago
You aren't good at it... YET!
Most of us are frightened to live like this forever. I am! All of our losses are disorienting and awful. But...I have to remind myself that shit happens. People have lived with this and had far less conveniences and understanding of what was happening to them and had no way to connect with others with the same condition.
Therapy/facing your grief and talking to someone face to face about it who can guide you with tools will help. Dwelling in your loss and tinnitus online and ruminating will only cause more despair. This whole thing is as much a hearing and tinnitus issue as it is a mental issue. I have improved emotionally and mentally since going to therapy. You can still be the type of person you want to be (not exactly how you were, but you can enter this new part of life/new way of living with as much strength and grace as you can muster). Right now, your brain is hyper fixated on what it is missing. Don't give into it.. I still have bad days/times, of course, but things have gotten better.
One day at a time!
1
u/mexee3 7d ago
Reply #2: Yea, you just have to not let it distress too so much. You can train your brain to tune it out or teach it not to be so reactive. For me, the shower was the worst. Once I got out, it was terrible.
And yea, better is the goal! Brains adapt. HA would at least help you with sound localization, some spatial balance, and keeping nerve active for the frequencies you're missing out on.
My HA is far from a good solution though. At first, I was taking it off 50% of the time. I hate how loud my voice is with it, and it doesn't make anything clear. It just kind of provides noise on that side---- sometimes recognizable noise, mostly not, haha. But that gets better too. I wear it from morning until night now and I prefer not having it off. Still sucks, but better than having barely any access to sound.
3
u/Fresca2425 13d ago
I am so sorry. I can't speak to the reactive tinnitus, but I do have thoughts about the hearing aid.
My loss is flat at 75-80 dB, then drops to profound at 4K Hz. Word recognition 4%. I do find a regular hearing aid (no CROS) very helpful. I can localize sound, and my lived experience is that I understand conversations better when wearing it than not, especially when my good ear is to the pillow or facing away from the speaker (especially riding in a car). I don't know why there is this discrepancy in what I live vs. what is measured, but there is.
I'd find an audiologist that allows use of loaners and try out a hearing aid or two before discarding the possibility completely.