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Living in a Noisy Country with Hyperacusis - Lina's Story
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- Опубліковано 4 тра 2023
- Today, our new video takes us to Colombia, where another victim of hyperacusis resides - Lina. She developed this condition two years ago and describes what it’s truly like. Her journey - one of sacrifice and profound adjustment-speaks volumes about hyperacusis. The life-altering effects were far-reaching, forcing her to drop a beloved hobby, too: attending dance classes. To compensate for that, she’s trying new activities that are quiet and more compatible with her condition.
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this drama going on about tinnitus and hyperacusis making me so emotional 😢
Hi Lina, I recently was diagnosed with Hyperacusis and I already have hearing loss in both ears and have hearing aids. The Hyperacusis is in one ear and similar to you, it seems there may be a malfunction of a muscle in my inner ear. I may know more in about a month after a few more appointments. That's just to give you some context that I understand and relate to what you are experiencing. I don't know yet where this will lead me but I love your positive approach and vulnerability. We are all scared of this condition. It's a huge change to our current world. But you aren't alone. And you have your entire life in front of you. There is research ongoing and you are young enough to benefit from new approaches, as they arise. I live in a quiet area and I love walking, so I wait until late in the afternoon or even later at night and head out to look at the moon and nature. I have met some people on these walks I may not have stopped to speak with in my past but now I take the time. I speak softly and carefully and as time goes on, I am noticing an improvement in my hearing. Keep trying new things - the art school sounds perfect. Quiet but an environment to experiment. And over time, you may find that you can listen to music, albeit at a lower frequency. You are so brave to share you story and thank you as it gave me hope and inspiration as well.
Thank you so much for your kindness and sweet words Mary. If I honest I felt a little weird in making a video and talking about myself (especially in another language from my original spanish); but I thought that it was important that people can see and listen of what this is about and how people like us have to adapt to a new type of "life"... Hopefully the more we show the world, the more we will inspire more researches that can benefit treatments and hopefully a cure. Every "cent" counts I guess. 🙂
I'm so sorry to hear about your condition. Is your hyperacusis related to our hearing loss?
You are lovely with so much humility. I diagnosed myself last year finding what was wrong by an internet search and an ENT doctor at a famous clinic said yes you have it and just go live with it. I am having to teach doctors about the effects of MRI's and even dental work...things that are not well known yet. With every new technology for health and dental conditions there are side effects that are not well known at this moment. Because people are not inside the pain it is hard for people to understand. We look normal on the outside. "It's all in your head," as they say in the states. Yes it is. I too am a dancer and I get that. It is my passion. I am so grateful for your sharing as I will use it with friends and perhaps my family. Some people just think I am a whiner...cry baby...again because they aren't in the pain.
Hello Susan, I replied to you yesterday but it seems it was deleted. I really understand what you are going through; I had to look for my symptoms in internet as well after the first hearing tests.
I was really scared to go to other doctors as it's not a known condition here and to be told that it was just psychological. A month ago I went to another hearing tests and the result did indeed showed an "over the normal hearing capacity", but it doesnt explain the constant pain.
Of course, please feel free to use the video with your family. I know how hard it can be even when they try to be supportive, my own family has been really supportive but I'm aware that a lot of times is difficult for them to have to reduce the volume when I'm close
@@linam.cardenas3830 hi Lina! Have you experienced any improvements in your condition so far?
I am so sorry you have to go through this Lina. I have no doubt though that you will find new passions that will be easy on the ears..and I may be a little based but I think archery is the perfect choice😉🙂
Archery is amazing and hope I can come back as soon as I can 🤗
An emotional reaction is perfectly normal, how can you not
Take it day by day. I have mild hyperacusis and tinnitus in my right ear. Some days its better than others. I pray everything will get normal again.
Absolutely, some days are better than others.. Two days ago, I almost cry when a neighboor was having a party in his house. Thankfuly I could manage it at the end with ear protection. One day at a time
Do you wear ear plugs?
@@Hew.Jarsol not all the time.
@@Hew.Jarsol Not all the time either, I try to wear them just when necessary
Hello Lina, so sorry you are having to deal with that condition, and i do hope you get better with time. TC and stay strong
Thank you so much Rick 🤗. Will do my best
Hello Lina , thanks for sharing your story. Have you look to LOOP EARPLUGS? Im trying to figure out my condition as well, and bought them to lower the sound in the gym and riding my motorcycle. These earplugs seem to help reducing the decibels around me. I'm empatic with your situtation since mine started in jan/2023 with tinnitus and evolved to sensitivity to either loud sounds and sounds like plastic bags, paper bags, aluminium foil ...
Thank you so much Andre, It's really relieving to learn about other people stories, especially when I have gone to a lot of hearing clinics here and it seems they havent't treated a case like mine yet. 😊 Yes I bought that brand and have been a life saver for me especially on times like christmas when everyone becomes loud crazy here; those were the earplugs I talked about but I didn't want to mention any brand to dont ruin the message.
I'm sorry to hear about your condition, I understand about the plastic bags, it happens the same to me; although I'm still able to tolerate those everyday sounds without earplugs for now... I'm trying my best to don't expose myself to potential noise trauma but here in Colombia can be a little difficult
God bless❤ 🙏🏼
I also suffer from hyperacusis and tinnitus. I try to do some supplementation to help myself:
- alfa-lipoic acid R-ALA
- vitamin B
- vitamin A and E
- magnesium
For the moment not cured but maybe need more time.
I also try hiperbaric chamber (HBOT) - IT is very loud, do not go there without proper ear protection.
This is not medical advice. I am not a doctor.
Thank you so much for the recommendations Tom.
At the moment I'm taking some magnesium and going to acupuncture to help me to reduce the stress in the neck muscles (close to the ears). 😊
How long have you have tinnitus and hyperacusis for?
Thanks for your answer.
Almost 5 years suffering from hyperacusis and tinnitus.
I can add also vitamin A and E are taken together with vitamin D and K.
I take also taurine (magnesium taurate) and iodine (together with boron and silicon).
Taurine and iodine defficiency may be linked with hyperacusis.
This is not medical advice. I am not a doctor.
I'm sorry to hear that, how did it happen?
Will check your recomendation indeed 😊. Thank you so much
It was noise-induced hearing loss.
I want to stress about hyperbaric chamber that without proper ear protection it can do more harm than benefit.
I use double hearing protection during session in HBOT. I use HBOT with pressure 1.6 ATA, so 1600 hPa, so 1.6 normal atmospheric pressure.
This is not medical advice. I am not a doctor.
@@tomtem933 hi tom tem, acustic shock guy here - 8 years in now... can you explan what the isobaric chamber dose for you?
thx
Hola Lina , que tipo de tapones usas ? Yo los use mucho tiempo pero ya no porque crea presión interna en mi oído y me causa más dolor 🤕
Hola Charnilet, uso una marca de Belgica llamada LOOP, mas especificamente los "experience pro" que me ayudan a reducir bastante el sonido exterior de la calle y lugares ruidosos como cine y bares. Como todo tapon para oido puede llegar a molestar si los tienes que usar por mucho tiempo, pero al menos vienen con diferentes tamaños de almohadillas en la caja para que escojas el que mejor se adapte y si no estoy mal sacaron la almohadilla XS pero creo que toca comprarla por aparte. Hasta el momento me han parecido muy buenos y discretos
Hay otra marca de la que he escuchado buenas referencias llamada FLARE pero no lo he probado aun
Que bien ! Los voy a buscar,
Haz averiguado acerca de cirugía para hyperacusys? Yo me la hize mejore solo 15%. Pero he escuchado testimonios de personas que con la cirugía tuvieron mejoría inmediata
@@charmiletalviarez48 como aqui en Bogotá no parece haber un conocimiento profundo del tema, no quiero arriesgarme a una cirugia sin saber que el profesional conoce el tema y no es algo experimental; pero muchas gracias por la recomendación 😊
Probé los ear plugs flare y no me sirvieron 😞, cómprare los LOOP
@@charmiletalviarez48 Si claro, pruebalos y me cuentas como te va con ellos. Revisa las diferentes opciones que tienen y mira con cual quieres empezar. 🙂
Earplugs don't change your perception of balance though😊
Yes, I was told that recently so I will check why I do feel some dizziness while I was wearing them in those classes; that happened especially with one called "jump" that it was a kind of aerobics on a small personal elastic bed and that didn't happened when I didn't wear them so I thought it could be the reason. Thank you for the information, need to check what it caused that feeling then
You were right, I do apologize. It seems that the dizziness it's related to the ear as recently I was told by a doctor that I'm having some episodes of vertigo. So I'm working in that 😊