I have lost my hearing (bilateral profound SSNHL)[CC]
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- Опубликовано: 26 июн 2021
- Hi, internet people. This is my first ever video. In this video, I talk about my experience with sudden deafness. I have put some links here in case you are interested.
My Website:
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This video was filmed using a google pixel 4a smartphone (affiliate link):
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![What I Can Hear as a Deaf Person (Hearing Aids and Cochlear Implant) [CC]](http://i.ytimg.com/vi/jHlVB0JOdv0/mqdefault.jpg)
![What I Can Hear as a Deaf Person (Hearing Aids and Cochlear Implant) [CC]](/img/tr.png)
![Getting Hearing Aids at 21 after losing my hearing [CC]](http://i.ytimg.com/vi/uaurlAwYb0g/mqdefault.jpg)
You are strong enough to take this in your stride and live a wonderful life.
Hello from Canada!
I can relate. I have severe hearing loss in my right ear only. They can't explain to me why either. My left ear is fine.
I am so sorry that you're going through this.
Stay strong! You're awesome
Hello and thank you for your comment. I didn't know before this happened to me that in most cases of hearing loss they never find the exact cause. I'm glad you can relate to my videos. I'm so surprised at how many people are watching them! I wish you the best of luck going through life with a hearing loss.
Nelle xx
Is your functional ear fine now? How do you protect it? I have been recently affected with SSHL in one ear too.
@@lp8688
I only have hearing loss in my right ear
@@lp8688 I’m praying that it doesn’t happen to both ears. I definitely need a hearing aid. It’s hard to understand people in public. And music too…
@@NFLdom22 Don't worry, it will not happen to your other ear. Get your functional ear checked with audiogram yearly once as a precaution. I am facing the similar problem, I find it very difficult to manage in a louder environment and it makes me feel tired and frustrated.
Hi Nelle, thanks for sharing your story. I also had a sudden hearing loss in my right ear in early July of 2020. Basically started experiencing that voices on TV were sounding funny in my right ear a bit before I went to bed. When I woke up in the morning I was stone deaf in that ear and later had bouts of severe vertigo. I was lucky to get in to see an Otolaryngologist later that day and was diagnosed with SSNHL and started immediately on the high dose prednisone treatments. My audiogram showed basically zero hearing in my right ear and some moderate to severe hearing loss in my left ear as well, but the doctor's didn't think that was related to the SSNHL episode and was likely a previously undiagnosed hearing loss. After treatment I did regain some hearing in the right ear but did not regain the ability to understand much speech in that ear. Months later I was fitted for hearing aids. I now wear a hearing aid in the left ear and a CROS unit in my right ear to help send sounds to my better side. I did not benefit from a hearing aid in the right ear. I have been thinking about whether cochlear implant might be a next step down the road so have been watching your later videos about your experiences with it. Thanks again!
Hi, thank you for your comment. I'm glad you enjoyed the video. I hope you find my videos about getting a cochlear implant helpful. I'm getting on really well with mine, but obviously as I'm profoundly deaf in both ears my experience will be a bit different than someone with asymmetrical hearing loss.
If you're interested, there is a youtube channel called 'Travis and Vanessa' that I watch. It's a girl in the US about my sort of age who got a CI in one ear and has moderate hearing loss in her other ear her videos might be more helpful to you because she has a more similar experience.
I hope this helps and good luck with whatever you decide regarding a CI.
Nelle xx
Hello from the Philippines. Sorry about your hearing, I was diagnosed with SSNHL March of 2021. Fortunately I only have it in my right ear, I went through prednisone & 2 ear injections. I got my hearing back to normal levels after about 3 months but had to deal with anxiety and depressive symptoms mainly because I found it hard to sleep with the tinnitus. I had a relapse after 6 months same ear but took prednisone and got the hearing back close to normal levels. Listening to you was a good experience for me. I live in a 3rd world country, I was frustrated to learn that there isnt much known about this condition, I am happy that you made a video so that others with this condition can learn about it. GODBLESS you
Hi from the UK. Thank you for your comment. I'm glad you managed to sort your hearing out and that there are no lasting repercussions. I'm glad you enjoyed the video.
Nelle xx
How are you now?
Hi was your hearing loss profound or mild? How is your hearing now? My doctor said SSHL once occurs, it keeps occuring in same ear even though if we are recovered.
How is your hearing now? Do you still have tinnitus?
I have tinnitus... it sounds like loud insects or electricity
Hello Nelle ,you are so brave and thoughtful to post this video , please do keep posting. 🙏 just a tip for sleeping , I have a dog that I let sleep next to me and she will hear anything in the night and alert me . I sleep much more because of her . ( she not a trained aid just a loving friend ) take care .
Hi, thank you for your comment. My parents aren't big fans of dogs sleeping in the beds, but I would if I could! I'm glad your dog helps you sleep and it's excellent advice.
Best Wishes,
Nelle xx
This exact same thing happened to me a few months ago from a brain condition I have. It’s one in my right ear but I had all symptoms of vertigo and everything you described. I’m awaiting my 18th birthday to try out a set of hearing aids. I am so happy I found your page. I’ve been waiting to stumble apon someone like me. This is a blessing
Hi, thank you for your comment. I'm sorry to hear you're going through this. Vertigo is the worst. I started this channel to hopefully find other people in the same situation because I didn't know of any so I'm glad it's working.
I wish you the best of luck with your hearing aids.
Nelle xx
@@nellefindlay I’m just happy to feel like I’m not alone in a situation like this. I knew that I wasn’t but it feels like that sometimes. Now I’m found a handful of people such as yourself and your audience as well who are struggling with this too. When I saw you replied to my comment I cried tears of pure joy in the middle of anatomy class. Thank you so much. Bless your soul!
@@emmebivens2261 Hi thank you for your comment. I sometimes feel like the only deaf person in the world too. Sorry for making you cry in your class. If you ever want to talk to me, there is an email address on the about section on my channel page. Feel free to send me an email whenever you like. I have way too much free time at the moment!
Hi Emme I hope you don't mind me replying to your message! I am glad Nelle decided to make these video's to suddenly lose all your hearing is not nice! I have been a hearing aid wearer for over 25 yrs! I was lucky my hearing gradually went mainly due to noisy machinery & a brain injury! Have you had a hearing test & if so how much is your loss! Mine is now 110db in both ears so like Nelle I am profoundly deaf! And have two powerful BTE hearing aids from the NHS! Also it seems I have usher's syndrome type 3 which affects hearing & sight so I am on the DeafBlind spectrum! I have balance issues which makes my sight worse! So with the winter coming I have had training to use a red/white long cane for the vision impaired!
So like Nelle make sure you get the best hearing aids for your loss! There is no shame in being deaf it can happen suddenly at any age! If you see my profile make sure like me & Nelle you maybe get coloured earmolds so people see that your deaf! You can get jewellery for your hearing aids! Don't put off getting them! If ever you need advice please message me back! Your not alone! I may not be 21 like Nelle but I am a good listener well I would be if I could hear! Please let us know how you get on & if you need any advice please ask as nothing is too much trouble! Best wishes Barry 🧡
@@barrytaylorprofoundlydeafi2479 I am so glad you reached out to me. This experience has been the utmost struggle for me. As a student in high school and college at the same time it gets a bit frustrating cuz I have to sit in certain areas I can actually hear my teachers and professors well. But the problem is I was not guaranteed the Hearing aids to work and my insurance won’t cover them till I’m 18. I turn 18 in November and I can’t wait for that day to get fitted and see if they even help. My doctor said they wouldn’t work cuz it’s complete nerve damage to my right ear. But I still want to try. And I definitely want to get colored ones so people can visualize that I’m deaf. It’s part of me now I’m not ashamed of it. I am quite glad that I’m different. Being like everyone else is boring you know. My hearing is only getting by the weeks so hopefully there’s some light at the end of the tunnel for me and you as well. I wish you a happy life and Nelle. Nelle has become like a friend to me even tho we don’t know each other. We are in the same boat tho which makes me happy. I don’t feel alone anymore in my situation. Now all 3 of us are this boat I can’t be more happy about it. Thank you
Hi again Nelle I wish I had found your video when u first posted it! The title says it all & gets people like myselfs attention! After first watching this video it put doubts in my mind whether I had usher's! I get bad vertigo & my balance is bad plus I went from severe loss to profound in very short time!
My surgery did a blood test & the optician did a sight & hearing test! My sight is up & down so I have to stop driving & unless it settles & glasses help I have to give up my driving licence! My hearing since the optician last tested it is now in the profound loss section 110db so the audiogram been sent to the audiology department at the hospital to see what next!
But I got an email from the doctors that the blood test shows it looks very much like menieres disease! The balance problems etc which they put down to an irregular heartbeat (which I still have) is to do with menieres! My hearing was worse when my balance & even tinnitus was bad! The audiologist at the optician did say in her report that she thinks menieres has left me profoundly deaf! She tweeked my hearing aids but like the title of your video I have lost all my hearing due to this sensorineural damage!
If it was not for finding nelle's video & it putting doubts in my mind they may have stuck with usher's!They can't rule it out 100% but they now say menieres has left me profoundly deaf in both ears! So please if you have any of the symptoms Nelle had see your doctor unlike us maybe save your hearing as believe me being profoundly deaf at this time could not be worse! Masks are a deaf persons nightmare! I am hoping above hope the cochlear implant gives Nelle back some useful hearing! Good luck in 3 weeks time 💜💜
Hi, thank you for your comment. Just to clarify, the doctors haven't been able to 100% confirm what caused me to lose my hearing. Their best guess at the moment is Meniere's disease, but the diagnosis hasn't been confirmed. Since I have lost almost all the hearing and balance function in both ears, they don't think I'm likely to have any further episodes of vertigo. I'm glad you're getting some answers about your own hearing loss and I wish you the best of luck.
Nelle xx
@@nellefindlay it is hard to get a diagnosis right with hearing loss! All I know is nearly all the little hairs in my inner ears have been destroyed leaving me profoundly deaf! & The markers they go by & other signs have all pointed to menieres disease! So now I am allowed by law access to my medical records it's saying likely cause menieres & no chance of any useful hearing ever again,so continue to use powerful hearing aids! Due to my medical history cochlear implants could be classed as too risky! I am glad all being well you should not get any further vertigo! And no there is nothing wrong with your hobbies! We are all different thank goodness! Your 100% right your focus is on your CI & any hearing aids will be sorted after its up & running! & Leaving the aid out of your right ear is good if you have to wait 4 weeks for activation! You have quite a following for good reasons to see a big smile when you hear the audiologist say something you can hear! I know only too well what's it's like to all but lose my remaining hearing! 😢your in your own muffled world! ❤️❤️
Hi again Nelle!! First off I want to urge all your subscribers to go to your website in the link you posted to read your lastest story! " Being deaf but not deaf" it's about people like Nelle who suddenly lose all their hearing & where they fit in with the deaf community! Well worth a read & I totally agree with what she has written!
You have come a long way since this first post 4mths ago! You did well to film 25mins! You could not hear,plus as you said the first hearing aids were not powerful enough & from what I have been told they whistled! It was one of those things you lost more hearing quickly & needed the solid earmolds you have now!
Your parents were stars! Your dad getting that ENT consultant appointment which in turn led to you being fast tracked for seeing if you were a suitable candidate for a CI plus with the NHS unable to fix you up with hearing aids for a few months I do believe your parents helped you get hearing aids privately which one of which you still use now!
But the result of this we all know! On the 13th October you had your implant surgery! And tomorrow 4th Nov it's activation day! If anyone will make a CI work it will be you! In all the video's so far you have been open & honest & got a great sense of humour! It's helps having a boyfriend like Will & your family for support! Your video's, comments & even emails have helped me no end! I am no youngster & had 30+ yrs of hearing loss! But 6 weeks ago it still shook me when my hearing aids stopped helping & I was profoundly deaf like Nelle! And like Nelle I was in denial with me it's was my hearing will soon come back it has before! But we both have hope! The NHS would not have done her implantation so quickly if they did not think she would benefit from it! & I have to hope when I get the latest NHS hearing aids they will help! But they can only boost hearing if any is left!
I am so happy Nelle will make a video record or her implantation & what a CI sounds like! Everyone should have a choice,a CI or hearing aid is not the enemy of the deaf community! It can help along with BSL! We did not ask to be deaf! & At the end of the day once our hearing aids/CI's are out we are like all other deaf people in a world of almost silence! Nelle deserves to be able to hear again & a CI is her best bet! Good luck & good vibes! 💜
Hi, thank you for your comment and your positive wishes.
Nelle xx
Hi again after seeing your audiogram my line is slightly lower than yours! So I am profoundly deaf! 💖
Hi, To be honest, I think my hearing is worse than that now. I think now it's all around the 100db range, but it doesn't really matter since I will hopefully be getting a cochlear implant soon.
Nelle xx
Hi Nelle, I found your channel after being diagnosed with partial deafness in 1 ear.
Your braveness humbles me. You really handle this situation in the most awesome way.
May I ask whether your hearing loss started 1 or 2 weeks after a Covid infection or Covid vaccination?
Hi, Thank you for your comment. I hope you're doing okay after your diagnosis.
I did experience the major drop in my hearing within 2 weeks of my second covid vaccination. However, I had been experiencing episodes of vertigo and intermittent hearing loss for a year previously. The specialist is currently of the opinion that my hearing loss is due to Meniere's disease and was not connected to my Covid-19 vaccine.
My situation is very unusual, vaccine or otherwise, so I definitely wouldn't want to put anyone off getting it.
I hope this helps.
Nelle xx
@@nellefindlay Your doctor might be too friendly, or perhaps afraid to put off people from getting vaccinated. But when I ask around there's suddenly dozens of friends and relatives who have experienced tinnitus and/or hearing loss for the first time in their lives after they got their vaccination. They just never dared to talk about it.
It's not in anyone's interest to hide the facts. As you mentioned: immediate intervention could have prevented the worst. Same in my case. The least the doctors can do is speak up and inform the public. It should not put people off vaccines. It would just add a warning that they need to monitor their hearing and rush themselves to hospital if needed.
Your situation seems less unusual than you think.
Thanks so much for your video. I started with 30% hearing loss in both ears and was coping well with hearing aids. Then after about 3 years of my hearing loss staying the same it got really bad in my left ear with terrible tinnitus. Now I have profound hearing loss.
My right ear stayed the same with 30% hearing loss. Now my right ear is just as bad and I have virtually no hearing without my hearing aids in either ear. In the space of a year I’ve lost my hearing.I have new Bluetooth hearing aids which are my lifeline!
Since losing my hearing I’ve wanted to hide indoors and not have to talk to anyone but I’m learning to deal with it better.
My fear is that in the end no hearing aid will be able to help me!!
I had no vertigo or any other symptoms only tinnitus and hearing loss. I had an MRI scan which came back normal?!! So no reasoning behind it. My audiologist suggested it may of been caused by covid which I had twice.
Nice to see how others cope especially as you’re so young!!
Will watch some more of your videos as they really help,thanks x
Hi, that sounds really difficult. If hearing aids are no longer beneficial to you, cochlear implants might be your best option. They seem super scary and extreme, but I've had mine for over a year now and it was the best decision ever for me.
I'm pretty much totally deaf (I can't hear anything below 100db in either ear) but with my implant I can hear 87% of speech and can even understand some speech with background noise (which would have been completely impossible before).
Since I made this video, my life has changed a lot (for the better) I now have a cochlear implant and am at university studying Modern Languages. I am able to understand lectures in a second language and am managing pretty well socially.
I really hope that you manage to find ways to work around your hearing loss. If there is anything I've learned these past couple of years is that being deaf doesn't need to control your life as long as you learn how to manage it effectively in a way that works for you. :)
@@nellefindlay my hearing aids do work at the moment and I’ve had them reprogrammed to deal with my recent loss of hearing in my right ear and since I’ve had them reprogrammed I can hear so much better!
My lasting worry is that in the end no hearing aids will work anymore but your message leaves me with some hope that the cochlear implants would possibly work for me.
I’m trying not to let this rule my life.
I’m so pleased they’ve worked for you and changed your life!!
Good luck for your journey at university!!
Xx
do you think this could have been a cause from the covid shots. Possibly triggering the immune system to attack other parts of body. Vitiligo goes after the malanocytes in the ear which is a possibility. I have this situation, I went to emergency saw a gp who said i will have to wait till the middle of june to get to see an ent .. hopefully, i have hearing left by then
I'm a HoH, partially deaf. I have hearing problems in both of my two ears, my left ear is moderate and my right ear is severe...but I still can hear using hearing aids (maybe CI too in the future)
All of your experience are what I have been experiencing from when I was 4 or below, until now. I'm 20. I can relate to all you are saying, and that somehow comforts me T.T Thank you for sharing your story! :D
I'm really happy that my videos have been helpful for you :)
I'll take a look at research paper about this I'm intrigued
I'm glad you're interested in learning more about this.
I have 70% loss in my left ear and 100% loss in my right ear but my kokaliya is alright
Hello Nelle, i had bilateral hearing loss March 2023, story of doctors visits relates a lot.
I was depressed than come across your videos, it gives me motivation to look forward at life positively and accept that change in life.
One question for you, how’s work and normal life for you now after couple years?
Hi, I recognise your user name from your messages on Instagram! Sorry for being terrible at replying, I hardly ever look at my Instagram. Everything is pretty normal for me now. I still struggle to hear stuff and get really tired from trying to understand people all the time, but I'm doing pretty well generally. My life is incredibly normal and boring, but that's probably a good thing.
Nelle :)
@@nellefindlay i do not use instagram, that must be somebody else. Thanks for replying, i was scared earlier when i got diagnosed with bilateral hearing loss, but now trying to make life normal, your videos definitely is one of big support.
Thanks for sharing your stories on internet.
May God bless you with Happiness:)
Hi Nelle I have just found your channel by accident I am sorry to learn you have lost your hearing! I have worn hearing aids for over 25 years I have 2 powerful hearing aids & I have severe to profound hearing loss! I am newly diagnosed with usher's syndrome type 3 which has left me legally on the DeafBlind spectrum with a bit of sight & hearing! So at night if I go out I have to use a red/white long blind cane! I don't know if it's me wearing your hearing aids giving out lots of feedback? You kept touching your right ear! If you need any advice feel free to message me! But if it is feedback you need better fitting earmolds! My audiogram showed I am now almost profoudly deaf! But I am glad hearing aids help a bit & maybe cochlear implants in both ears! Ps make sure you get speech therapy as mine is really bad now due to covid & lockdown! ❤️❤️❤️
Hi, thank you for your comment. I'm sorry to hear about your Usher's syndrome. While I am not deafblind, my eyesight is quite bad due to having a bilateral amblyopia that wasn't picked up when I was young enough to correct it. Luckily, I'm still just about legal to drive with my glasses, but I spent a lot of time at the eye department when I was a child. My best friend at school was also partially sighted so I can appreciate the struggle.
With regards to the feedback with my hearing aids, this video was before I got my new hearing aids. The hearing aids I was using in this video had a terrible feedback issue, so that's why I keep touching my ear to push the earmold back in. With my new hearing aids, the feedback issue is mostly resolved, they now only whistle when I smile.
I'll hopefully be getting a cochlear implant in October and I'll be sure to keep the internet updated. Maybe documenting my experience will help you decide whether that's something you want to consider.
With regards to asking for advice etc. Is there a way to message people privately from youtube?
Best Wishes
Nelle xx
@@nellefindlay hi again I don't know much about private messaging on you tube but do you have an Instagram account as I would love to chat to you more about your hearing aids & CI? Are you going private with your CI? I am glad your getting it done in October! I did not know there were different processers for CI the receivers on the ear look big but will be well worth it! Do you know how long between having the operation & activation? A friend of mine thought it was my hearing aids whistling when watching your first video as it kept on coming from your right ear!
The problem being the more powerful the aids the more feedback & those tulip tips are only for moderate hearing loss! You now have like me the most powerful hearing aids! Mine are NHS so not top of the range so I feel sorry for your parents! Be careful with PIP assessments as when I went for mine they tried to catch me out & set off the fire alarm if I jumped then I was not deaf enough!
I can only imagine what your going through! Suddenly going deaf & losing most of your hearing! Plus having sight problems & hearing problems it's gonna be harder for you to drive! I just hope an implant will restore some hearing! You should be allowed two with your hearing loss & being so young! I hope you keep your hearing aid for the other ear
I now not only sound deaf but have developed a lisp because I cannot hear my voice now! At least you have a supportive boyfriend & parents that love you & want the best for you! Must be horrible not hearing their voices! If you want to chat more I am on Instagram & have an email account! I do have other medical problems like a permanent indwelling Foley catheter! So I have been through quite a lot! Hang in there your doing the right thing! ❤️❤️
Your talking is very clear so any issues with your speech degrading
Not really, I tend to speak pretty loud and sometimes can drop the ends of words when I'm tired but I'm still very clear and understandable. I do make a bit more of an effort to speak clearly in my videos though because it makes it easier for the subtitles. I do have a couple of videos about my speech if you're interested.
There's a high pitched noised in the background of your video ,the pitch changes ??
Haha i think it's feedback from your aid as when you tapped your aid it reduced still hear it though X
Yes, I had a lot of issues with these hearing aids and they would have absolutely constant feedback (which I couldn't hear). I got new hearing aids shortly after this video though and they didn't have the feedback issue.
I with you sister😢…
Hi, if you've experienced sudden hearing loss, I'm happy to answer any questions you may have. I made this video quite a while ago now so a lot of things have changed since making this video, including getting a cochlear implant. I wish you all the best with whatever you're going through at the moment.
Nelle
That's madness ..... so it affects the choclear ?
Yes, I didn't even know it was possible until it happened to me. The doctors didn't even seem all that surprised.
Hi I have 70% loss in my left year. And 100% loss in my right year although my kokaliya is all right in both year. What should I do? Should I go for cochlear implant? Which cochlea device will be better? And what will be the cost? Although I live in India.
Hi, you’ll definitely want to discuss this with an audiologist because it depends a lot on your individual situation.
I personally use the cochlear nucleus 7 and have a good experience with it.
Cochlear implants tend to be very expensive but can often be covered with health insurance or social healthcare depending on the place. I received mine free through the UK’s national health service.
I would love to chat with you about this, this happened to someone I love. They are completely deaf now also trying to navigate cochlear implants.
Hi, thank you for your comment. I'm sorry to hear that someone you know is going through the same thing. I'd love to be able to talk to you more about it. Is there a way to chat privately from youtube?
I will hopefully be receiving a cochlear implant in October and will be sure to keep the internet updated. Maybe my experience will help your loved one make a decision about getting a cochlear implant.
Nelle xx
In case you want to chat to me, I have put an email address in the about section on my channel. Feel free to contact me if you would like.
Nelle xx
Hello I'm deaf profound my name is Niyi from Colombia
Greetings
Hola. Espero que disfrutaste el video. Saludos desde el Reino Unido
@@nellefindlay woah Do you know Spanish?😃🌺
@@niyitoro5461 Sí, hablo español x
@@nellefindlay how?
Do you have family who speak spanish?
*end of video* “probably nobody is watching this”
I am a nobody 🥺
Haha, anyway- I have normal to profound hearing loss, so not as bad as yours -but I find videos like this useful :)
What hearing aid brand do you have ? I have the phonak audeo paradise .
Btw hello from Nova Scotia , Canada ♥️
Hi, I tried the phonak audeo paradise, that's what I had when I filmed this video, but it turns out I'm too deaf for those. Now I have the Phonak Naida high powered ones. I'll make a video about my hearing aids at some point since it appears someone is interested.
Anyway, thank you very much for taking the time to watch my video and leave a comment.
Nelle xx
@@nellefindlay you could also try an fm system like the roger pen or roger select .
But yes, I will be following your channel in case of future videos :)
Thanks ☺️
My story is 100% same as u 😞
Me too 😢😢😢😢😢