Noelle's Hyperacusis Story
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- Опубликовано: 19 сен 2022
- Noelle developed hyperacusis and craniocervical instability after getting a concussion and neck injury on a roller coaster in 2019.
In her video, she talks about the profound negative effects this injury has had on every aspect of her life, the difficulties finding treatment options for these injuries, and her determination to regain a quality life again.
So sussinctly put but with so much detail of how we live our lives. You're incredible for being this vulnerable.
I have bothersome Tinnitus and I relate to you. I can't sadly just focus on getting better because I have to work and provide for my family. For that reason, I can't run a lot of studies to check for my tinnitus, and if I did, doctors, as you said, will find nothing. I went through months of doing studies and doctors telling me: "Everything looks fine" , bleeding money like crazy, to the point that now I'm moving from my current home to a smaller home because I can't afford that anymore. There are things I can't do anymore because I bled so much money that I can't afford them anymore. I wholeheartedly relate with you and wonder as well but still, I try to maintain hope... At least I have my wife and my daughter, and they are the ones that drive me...
Thanks for sharing. I have the CCI and EDS as well as hyperacusis. The last injury to my neck was done by a dentist who was too rough on my jaw and neck.
I have exactly the same injuries and symptoms, thank you for explaining as I did not know what this instability was called. My dr is nice but clueless, specialists have all been unhelpful.
ruclips.net/video/NQ2RGFT-mnU/видео.html
Dont say it too loud or they will charge you another 100 for "Professional Evaulation"
I can't thank you enough for sharing your experience. I hope you are able to get the professional therapies, treatments, advice, and not be dismissed as you have been. In the last months I have developed hyperacusis as a rare side effect of a medication I began taking. Of course I have quit taking it [after 1 1/2 months], but still some of the side effects continue. I cried when you asked why no doctor mentioned the DMX test for you. Every doctor I saw dismissed the possibility of it being the medication, including the doctor who prescribed it!]. I have an added symptom of a numb face. Here's wishing us luck. We're both brave.
Thanks for sharing your story Noelle
Iam aswell suffering from hyperacusis for 4 years now and it changed my life...
Dont loose hope!
thats exactly how i feel. Feel better and big love
You've explained it so perfectly 🙏
Bless her heart. I'm so glad she allowed ya'll to put this up. I truly hope one day we all can be free from this hell we live in. I long for the day our suffering is a thing of the past and society affords us the sympathy and compasion we deserve. To all my brothers and sisters fighting this demon I love you.
C'est exactement ce que je vis ! ça fait plaisir de voir que je ne suis pas tout seul 😊
Hi. Just wanna tell you something as a person who has been living with this issue for almost 14 years. Don't focus on getting better. Focus on the ways you can live your life with this condition. The worst thing i did was avoiding to enjoy life cause i had this issue. I thought only after i get better i can do the things i like , and this specific day never came. So i lost 10 years of my life because i was so depressed i couldn't even move to do something. When i turned 30 i changed my life and i started studying day and night to get to architecture school (the field i always loved to study)again and start a new life. Right now I'm finishing my masters in architecture and I'm looking forward for a PHD position. Just wanted to say that, dont waste time. If there is a cure some day ,you will be informed and you will use it, but if there is not, then you won't waste your time thinking and searching day and night for that. Be smart,don't act like me. Remeber, a successful person with a health issue is sooooo much better than an unsuccessful person with the same issue. Don't think about the things you can't do ,think about the things you can still be doing. You've got so much blessing you've completely forgot about.Furthermore, hyperacusis gets worse in 2 cases: 1. When you isolate yourself 2. When you have depression and anxiety. So engage in social activities( not just hanging out with friends. It has to be meaningful like doing a job or service) and also consult with your doctor and use Anti Depressants if you need that. Quit alcohol and smoking. Live a healthy life ,stay out the comfort zone and get through the problems. That's it. Best wishes
Thank you for this comment 🙏
This comment is the real deal that’s exactly how life is supposed to be approached when dealing with harsh conditions cause really there is no other way unless there’s a cure of course but if there is none atm. Just try to thrive and make the most of what you been given. Make those around you happy and you will find yourself becoming happy too despite it. Don’t be defeated
How did you study and focus is your head is pounding from the hyperacusis. And you feel so bad and depressed from the new meds?
@@Hdshalom i used anti depresants and pink noise to focus. That's it.
@@arminoraee2508 I hear a lot about Pink noise... But how does it work and what dosage etc?
Thanks
You got to be strong, and believe in yourself. The hyperacusis community is there 💗we understand you.
I’m in tears… every.single. thing. You described I’ve experienced and litterally feel you pain, keep up with the sound therapy it helps also you can try nerve pain blockers around your head and neck.
We are in the same boat with different symptoms. Do not waste your time with anyone but people who understand this condition. You will get there! CCI is insanity and it’s upended my life. I also can’t think of the future right now. Best of luck to you. Why no attention is paid to injured neck ligaments baffles me as well
Thanks for sharing Noelle. I hope your condition is better nowadays. ❤ Did you get any sound teraphy or other during this process?
God bless you ❤
My hyperacusis was successfully treated a few years ago by The Hearing Doctor in Los Angeles. His name is Sol Marghzar and he's an audiologist. It cost me close to $3,000, but he gave me a full consultation and special earpieces that play pink noise that sounds like soft static. They would have to be in my ears and turned on during the day while other sounds were going on. They don't work if you sleep with them. The pink noise helps the dorsal cochlear nucleus, a cluster of nerves in your ears, to stop over-reacting and calm down. I've taken good care of the earpieces and every year or two I have to wear them again for a few days. Things like hard objects clanking together can trigger the condition again. I remember when the sound of running water even hurt my ears.
Hello, Have you try acupuncture, or chiropractic? Or suplement like magnesium or B12?
Have you tried seeing an upper cervical chiropractor? Do you have tinnitus also?
Hey. I got similar story. I got my shoulder ang neck ligaments stretched out in a sports injury. Physio made it worse and my tinnitus, fullness in ear and hyperacusis and vertigo began. Got prolotherapy done to my shoulders and got 60% relief. Also I focus on posture otherwise there is spike in my tinnitus. I don't lift even a gram weight with injured hand.
ps - it took me 5 years to get better after visiting 25 doctors in different specialisations most of whom just counselled me that nothing is wrong and all is in your head. Read a bit about vagus nerve and eustachian tube dysfunction and you will get useful info. Hope this helps you
I have severe, debilitating pain hyperacusis and will be evaluated for Superior Canal Dehiscense Syndrome with a specialized CT soon. Have they looked into that as being part of what causes your sounds issues? I hate to hope this is what I'm diagnosed with but grasping at straws is where I'm stuck now.
Hi, I’m 14 just found out that I have hyperacusis and I’m getting hearing aids for it
How can I follow you for your further future updates of your condition?
Is this a common injury from roller coasters?
After 30 years im finished. Good luck
I am going through the same thing. I can relate so much to how your priorities change. Planning for the future seems inpossible, out if question becauae everything depends on me somehow getting better. 😢
Wanted to ask, is anybody hear having hyperacusis react from their own voice and does it also get worse for you when you get sick with fever and cough?
How are you doing today 1 year later?
how do you feel today ? I can totally relate to statement : my life is passing by while other live their life
😢
I also have or had hyperacusis and do have Tinnitus. Maybe try an audiologist and try Trt .it may help with the hyperacusis as it did mine . I'm in Pittsburgh pa .feel free to reply .I feel for andknow what you mean
Do you have pain hyperacusis or loudness hyperacusis? Where did you go for your trt in Pittsburgh? I live in Pittsburgh and want to try trt.
Where did you go for TRT in Pittsburgh. Please respond if you see this.
What's trt?
@@dianecelento4974it only works with loudness hyper otherwise it could hurt u more
@@mistwitch8795tinnitus retraining therapy
Spijtig genoeg word er niet genoeg informatie meegegeven over bepaalde chronische ziektes roken muziek drugs alcohol gokken pretparken bijvoorbeeld op sigaretten pakken staat er op de verpakking (ongezond) maar op hoofdtelefoons staat bijna niks over oorpijn
How often do you get this one "Its not that bad!" or "Its not that loud!"
People staring at you like "why are you covering your ears, you jerk"
and its like Wait, No...Sound hurts! But you can never explain it well enough...
Very frustrating indeed
Have you heard of Dr. Silverstein?
Luckily she could afford that expensive surgery
You are so beautiful!
You need subtitles for your videos
Hi Greg, all of our videos contain closed captions.
Its mick foleys daughter...the wwf wrestler called mankind
@@Trv1206 she has the full video on her RUclips page
Maybe if you could find a way to contact Dolly Parton, she might be willing to help you financially, since it happened at her theme park?🤔
I really believe she would help you, if you could just find a way to contact her.
try cold lazer therapy and cranial scaral therapy
Try Liam stops tinnitus
Lol he's a scammer...He says Fasting, no vegetables, clean mould away and have cold showers is the cure!
@@Hew.Jarsol ever tried it, I tried it and it worked but not really
I was diagnosed with Hyperacusis in 2009 from a minor ear infection, it does not take much to get this condition. You explained what I go through everyday as well, as life is like a twilight zone with Hyperacusis. I too went to many ENT's specialist and universities, all I was offered was a hearing aid and got shoulder shruggs. There is not much empathy in the world for sufferers like us, people have a hard time putting us in their shoes, they cannot even imagine. I think there is hope though, I did find a doctor that specializes in Hyperacusis, they have a surgery now, they go in with skin graph and put in on the oval window, sort of restoring a sound buffer, as it is a membrane to the hearing. You have to get a CT scan of the temporal bone, unfortunately the y would not tell me the price of the procedure, the place is out of Florida. I can give you details, im not an affiliate or anything but just wanted to say a procedure does exist. Look into it. www.earsinus.com/inventions-procedures
How successful is this surgery?
@@tan17391 85% of only 22 people that have done it. They started this surgery in 2019 so its new, unfortunately there is only one place that can be done, and you have to get a CT scan in order to be evaluated.
@@navysailor1980 my case has been purely due to chronic health anxiety. I assume since i have no hearing damage, trauma. I may not qualify?