What is SPI-1005 aiming to do? There's so many treatments coming I have lost track.
Loudness Hyperacusis and a "Cookie Bite" Audiogram
- Thread starter Orions Pain
- Start date
Member- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
It's supposed to be helpful for stemming cochlear inflammation - it's thought there could be a major inflammatory component to pain hyperacusis so in that case it could help us.
Yes I think so ideally, it would be amazing. But I have a lot of hope it will help anyway just by reducing the cochlea side of the inflammation because it might make you less susceptible to setbacks in the first place as well if an already elevated cochlea inflammation level plays a part in setbacks.
There's that other potential unknown as well which is can ATP diffuse through the round window from the cochlea to the middle ear? It apparently is possible the other way around with middle ATP to the cochlea and we know it happens when administering intratympanic drugs so could it be possible in reverse? I've never found an answer on it so far.
A lot of the quality of music, in my experience, is in the very high end. To experience the nuances, textures, layers, it is important to hear well beyond 4 kHz, I think, at least in my case...
If we do not know how down your audiogram goes we cannot really comment on it, but anyway audiograms change over time.
I think it is very common to start losing hearing from the high end (8 kHz) down, due to the way the hair cells inside the Organ of Corti are displayed, due to their positioning.
Other people have the notch at 4 kHz, which is a sign of noise-induced hearing loss, sometimes due to a one-off exposure. Audiogram takes a big dip at 4 kHz and then goes up.
My personal experience with music perception is that my hearing could sort of compensate the mild high frequency hearing loss until it got close to 35 dB at 6 kHz, and 4 kHz and 3 kHz started going down to 20 - 25 dB. So if you have only a slight loss on 6 kHz and up, and very minor at 4 kHz and lower frequencies maybe you can still compensate when listenting to music...
So sorry to hear about all people who ends up with tinnitus and/or hyperacusis when going to concerts and other events. We do it for a fun and memorable experience and end up being injured for life. I can't understand how it can be legal still. I warn my friends and family about concerts and I think it has made an impact on them. They see how much I suffer.
@Orions Pain For how long did you have tinnitus/hyperacusis before the second trauma? I hope your situation will improve so you can leave your home. Do you work from home or how do you provide for yourself?
This experience have made me anxious and I have to take antidepressants to be able to cope. I'm constantly afraid that my condition will get worse but at the same time I have to continue living.
Another thing, I have pretty recent CT and MRI results. Could they see cochlear inflammation? Because they said everything was fine according to the images.
- Feb 6, 2020
- 971
- Tinnitus Since
- 11/2019
- Cause of Tinnitus
- Noise
It is so sad! The worst part is it could have been prevented! I unfortunately didn't even know about Tinnitus or that we should wear ear plugs to concerts until it was too late. I've warned friends too and some took me seriously while some didn't.
I had hyperacusis/tinnitus for about 9 months before my second injury. I work from home at the moment and very thankful to have the opportunity. Have you found anti-depressants to be helpful?
Do you think this could apply to hearing aids as well? Like turning up the treble on them?
I have been using earplugs when attending indoor concerts because they are often too loud but not on festivals, nightclubs and bars. I have been most careful of all my friends and I'm the only one who acquired tinnitus. My grandma and dad also have tinnitus, but the told me after I got it and not before. What a bummer!
If I had known about the severity of hearing loss then I would never have attended concerts. Not worth it!
I think the antidepressants helped me when I first got tinnitus. When I was in a better place I decided to taper and then stopped using them. My tinnitus and hyperacusis started bother me a whole lot more this fall so I had to start again. They take a way some of my anxiety and keep me from bursting in to tears uncontrollable. I guess they numb your feelings a bit. I would never start with antidepressants if it wasn't for this condition. I figure I'll continue with them until there's a cure for this. Better to be able to control ones emotions along the tinnitus journey.
They do not do anything for your pain though, do they? I'm about THIS close to getting on Xanax.
The technology doesn't exist, unless you want to kill yourself from radiation. That's why tinnitus diagnosis is so bad.
Probably because of the habituation mindset, they're told it's not a big deal so they don't have the mind to tell their kids about the dangers of loud noises since they're used to it. I'll be sure to make my kids wear earplugs at concerts/mowing the lawn. I doubt I'd even let them use headphones.
- Feb 6, 2020
- 971
- Tinnitus Since
- 11/2019
- Cause of Tinnitus
- Noise
There is no reliable imaging to see the inner ear. At least not the stuff that matters. Everything in there is tiny - that's part of the reason why all of these conditions are so unknown.
If they had reactive tinnitus and hyperacusis they would have told their kids about it. A shame that people think tinnitus isn't a big deal and most people don't know it can get worse and make your life limited.
My tinnitus fluctuates a lot. On days when my tinnitus is high then my ears feel inflamed. That's really hard too handle. Normal days I mostly have discomfort and can handle it through the day. I guess I'm used to it now. The antidepressants does nothing for the pain unfortunately. I guess it helps in that senses that I don't get as upset as I used to. The anxiety is kept under control.
They should have told me but I don't blame them for not doing so. It was my choice to attend concerts, festivals and nightclubs but in my defense I didn't know about the danger. I had heard the word tinnitus before but didn't know that you could get it that easy. I thought musicians and industrial workers get it if they don't use ear protection because of the amount of time they spend in environments with loud sounds. I didn't know that hyperacusis existed.
Personally I think one should tell their children about tinnitus and hyperacusis if it runs in the family. It sucks to know that it's a high risk you'll get it, but at least you have the possibility to protect yourself and make informed decisions. I don't think I'll have a kid myself. It's very hard to be in a relationship with someone with these conditions and it would be even harder to take care of another life. I also feel that my crap genes should not be carried on to someone else and I'm kind of gloom and doom about what the future holds.
That's the problem with noise-induced hearing problems. You can go to one loud event and it is fine, next time it is fine as well, and one day it is like the straw that broke the camel back, it is not fine, and your hearing is ruined for life.
And actually the people who have better hearing in theory can cope better with loudness...
That's what I thought many many years ago... you will find a way, you'll see. Many people do not really know they hear let's say sub-par or not so well, so they won't tell you that. A person who has hearing loss from childhood cannot really know how loud the world is, or a concert, or traffic, or so many other noise insults... so they do not comment on this just because they have not been able to experience it. There is a lot of people with mild hearing loss since childhood, many more than we could think of.
I don't have measurable hearing loss on a audiogram but I know that my hearing is worse now. I suppose I have hidden hearing loss because it's harder for me to process and filter sounds.
I just don't want someone else to experience this because it's horrible. Also I'm starting to get old myself and wouldn't want to have a kid before I know that it's possible to regenerate hair cells and get rid of tinnitus and hyperacusis. My siblings have kids and they are really loud even with hearing protection.
You look about 22 though, don't stress about having kids unless that's a dream of yours in which case I'm sorry of course.
A pure tone audiogram cannot measure the quality of your hearing, the nuances of sound processing, pitch, intonation, etc. Decoding language and music is not exactly the same, and decoding language, speech-in-background noise multiplies the complexity of this task. So basically hearing tests are worth almost nothing, because they are carried out in laboratory situations (a soundproofed cabin) instead of in real world situations, where there is going to be noise and competing sounds around.
As for kids and life plans, I encourage you to live your life instead of getting secluded or cornered by this. In the end no matter what you do, it will not change that much the outcome. Aside of not going to obviously loud places, you can do a lot of things.
They are just to measure speech in noise recognition, that's all audiologists care about. The problem is when they start getting treated as an accurate diagnostic tool for tinnitus.
- Feb 6, 2020
- 971
- Tinnitus Since
- 11/2019
- Cause of Tinnitus
- Noise
Just came here to add a comment that I think within "noxacusis" there are even more sub-categories.
There is instant pain from sound, such as a stab or skewer type pain.
Then there is "delayed" pain which manifests mostly as burning (often primarily on the face, ear canals and neck). It seems like this type of pain is mainly triggered by "electronic audio" (phone, speakers of any sort but mainly small, poor quality speakers). I fall into the category of the latter, and I've had times where my pain flares even in silence or wakes me up in the middle of the night.
It does seem to be an issue of cranial nerve sensitization - both cranial and spinal. My list of triggers now includes cold wind/cold air, me physically touching my face, and using ear plugs (intensifies burn). I can't wear ear muffs because the band at the top gives me that gnawing cold burning on my scalp.
Who would have thought noise does all of this right? Still unbelievable.
There is instant pain from sound, such as a stab or skewer type pain.
Then there is "delayed" pain which manifests mostly as burning (often primarily on the face, ear canals and neck). It seems like this type of pain is mainly triggered by "electronic audio" (phone, speakers of any sort but mainly small, poor quality speakers). I fall into the category of the latter, and I've had times where my pain flares even in silence or wakes me up in the middle of the night.
It does seem to be an issue of cranial nerve sensitization - both cranial and spinal. My list of triggers now includes cold wind/cold air, me physically touching my face, and using ear plugs (intensifies burn). I can't wear ear muffs because the band at the top gives me that gnawing cold burning on my scalp.
Who would have thought noise does all of this right? Still unbelievable.