I'm Sorry, Everyone. I'm Not Weak and This Isn't Suicide, There Was No Other Way to Hear Silence.

There really is no other way. My ears can't recover, there's nothing I can do to stop the ringing in my ears. I can't enjoy life anymore. This world has become too noisy. My ears are too damaged. And no matter what I do, some unexpected noise can all of a sudden ruin everything. I wear earplugs every time I leave my house. I avoid loud places. I even wear them at home, when doind the dishes or using the vacuum cleaner. I have been extra careful. But as I said, unexpected things happen.

My grandma is in hospital. She's 91 years old, she only has a few days left.. Her heart and lungs are failing. I've been spending a lot of time there. She can barely talk anymore. But she's always so happy when she sees me. My mom and I have spent time at my grandma's house, because it's not far from the hospital, so we can visit her as often as possible. Anyway, we we were searching for some of her old photos. Behind the photo albums we found some strange box, so we decided to open it. We saw some strange object, looked a bit like a flashlight. All of a sudden a freaking loud alarm went off, my ears have never hurt so much before, I covered my ears and run as far as possible in tears and pain. My mom managed to silence it. That object was a personal alarm security guard. We didn't know my grandma even had something like that. What kind of horrible luck can this be... We din't even press anything but the alarm went off. Wtf... There was no time to react.

I read about those things.. the alarm is 120-130 dB... Everyting happened so fast... And my ears were already messed up...

My tinnitus can't just go away. There's no hope. So many noise exposures, ototoxic meds, etc.

Before I got tinnitus, I listened to music a lot. I had earbuds. The volume was never loud. But they are way more dangerous than headphones..

I went to the movies quite often, every few months.

I had a severe clostridium difficile infection, had a 3 week course of antibiotics... Vancomysin... for 3 weeks! That antibiotic is very dangerous! The doctor said that some people have either lost their hearing, or vision.. but the infection was so dangerous. I had to choose. Death or Vancomysin. Back then, I knew nothing about tinnitus. If I had known, I would have chosen death!!

Also, I had several MRI scans done. Some people get tinnitus from MRI. And I had 3 MRI tests. Head MRI, because I also have pulsatile tinnitus, they wanted to rule out any tumors. Neck MRI (I have degenerative disc disease and I'm only 26! - C5-6 disc dehydration). And an MRI of my liver. I have some hemangiomas in my liver, so they wanted to make sure they haven't grown larger. Little did I know, that those machines are so loud...

And then there's all the other noise exposures.. like fire alarms, ambulance sirens.. etc...

This is too much...

 

It can fade as a result of that Irish device. Check out the testimonials of the people who tried it. It looks like it really has potential.
https://www.neuromoddevices.com/stories

Most people listen to earphones, go to the movies, have MRI and are completely fine. A significant (possibly the overwhelming majority) fraction of T sufferers end up being ok even after noise exposure.

Of course you being blasted by that personal alarm is very disturbing. Have you experienced your T getting louder or ear fullness afterwards?

 

@Bill Bauer,
Have you done much research on Neuromod? I'm trying to figure out what it is all about. Is it a device that you wear all the time or do you wear it for a treatment period and it retrains your brain?

 

No, I know very little about it. I just know that the company can boast that it has the capacity to help some people.

It is my understanding that one needs to have daily sessions, for something like 10 weeks.
https://www.neuromoddevices.com/company/technology

 

@Jemina beg, borrow or steal to try this neuromod device. You have fuck all to loose at this point...me neither. We’re in the same boat. My T is a screaming nightmare that never even lets up. Totally unmaskable. But I’m going to to give this thing a go. Last roll of the dice! I feel I owe it @RCP1 because he’s so enthusiastically wanting his countrymen to save us. Let’s see if they can before jacking it in.

 

Not sure if and when Neuromod will be available here in Finland?

 

I think you could travel to Ireland.

 

Hi Jemina,

I can completely relate to your experience and you are doing all the right things in limiting your exposure to loud noise. The first year after I got tinnitus I had some really horrible experiences with exposure to alarms and sirens, which are all crazily loud. I had an MRI which was also very loud even with earplugs. I now never go to the cinema - again a crazy loud level of noise - and avoid any prolonged loud noise exposure as much as possible. But six years after I first got tinnitus I am fine and completely habituated. I am absolutely not complacent about the dangers of loud noise exposure but try to limit this as much as humanly possible.

Do consider that things can get better and you have your whole life ahead of you.

 

I'd really like to know why some people's tinnitus completely disappears. I mean, how does it happen?

 

I'm going to be blunt, your ears are absolutely not "too damaged".

In my life I've been exposed extensively to extremely loud club music (both as a patron and as a bouncer), drove/rode and spent a lot LOUD cars and motorcycles, unprotected explosions and gunshots, 150 plus decibel audio systems (had some wild shit in my car and home), frequent use of high quality (and very powerful) headphones, use of loud appliances and tools almost daily, a factory job when I was younger that would make my ears ring on a regular basis, etc.

As a child I had frequent ear infections, which I know has to have contributed in making my tinnitus worse. I've taken so many ototoxic drugs in my lifetime it would make your spin. I have neck and back problems that are almost unheard of in a 27 year old, which I'm sure also contributes to the severity.

EVEN with all that damage, my ears are still much more resilient to future damage than some on this forum could probably ever believe. Sure my ears ring quite loudly at times, but once I started treating my hyperacusis, I realized that my ears were absolutely not "extremely delicate", maybe just a tad more, but nothing like you hear on Tinnitus talk.

I made the realization that just about every "spike" was simply a hyperacusis reaction, caused by hypersensitivity and a vicious cycle of stress and anxiety. I starting DIY noise exposure therapy, and made a genuine effort to stop giving "spikes" so much power. Heck sometimes a "spike" is just from something you ate or something else silly like that, and will resolve after a few hours. I now refer to them as fluctuations, and they come much less frequently, going away quickly when they do.

If you are not in the position to DIY in regards to hyperacusis treatment, you absolutely need to seek professional help and guidance. It is foolish to throw your life away without even trying. I've have this condition for almost a decade, you get used to the noise, and if you have H you take the appropriate steps to resolve it.

Some members of the this forum are bad influences, and have probably led you to conclude that suicide is your only option. These people are sick, and should be in treatment, not on a support forum advocating for folks to off themselves. Listen to the vets on here, we've been through all the trials and tribulations, and believe me when I say that it does indeed get better.

Best wishes,
Ross

 

You're supposed to use it for 30-60 minutes each day for at least 10 weeks. The participants of their recent trials used it for 12 weeks. It's similar to the devices by the University of Michigan and the University of Minnesota. The approach aims to reset the activity of fusiform cells, which normally help our brains receive and process both sounds and sensations such as touch or vibration—what scientists call somatosensory inputs.

“The brain, and specifically the region of the brainstem called the dorsal cochlear nucleus, is the root of tinnitus,” said Susan Shore, the U-M Medical School professor who leads the research team. “When the main neurons in this region, called fusiform cells, become hyperactive and synchronize with one another, the phantom signal is transmitted into other centers where perception occurs.
“If we can stop these signals, we can stop tinnitus. That is what our approach attempts to do, and we’re encouraged by these initial parallel results in animals and humans.”

The device is going to be available in certain European countries in 2019, they couldn't specify which countries yet. They are launching it in Ireland in January.

I agree with many of your points but it doesn't get better for everyone and not everyone gets used to it. In catastrophic cases a normal life isn't possible anymore. But I don't think that's the case for Jemina, I think they're still in the early panic stages and that things can get better for them.

 

SOITA MULLE PLIIS, laitoin numeron privaan, voidaan jutella puhelimessa.

1) Glad to see that you are alive, please don't do anything to yourself, we can work it out!!!

2) You've had T for like almost 6 months now and it can really go away, there are things that we can try if you want, to try to take the T/H away, it helped for me atleast, please call me if you want help, I can really come and help you since I live near to you, I tried all them tinnitus doctors and specialists and yadda yadda, but when my ears really got better I started thinking like I would want to start my own clinic and just help people that suffer from tinnitus and hyperacusia because when you get in "there" it seems like you can't get help from nowhere and nothing helps etc, but I CAN really help you, jus give me a call.

3) I live close to you and I have nothing to do in my life, like I don't have any obligations, but you need help and omg this sounds real weird to write/read but I can really like even come to where you live and just help you. I don't help with self harm, I will help you with tinnitus / hyperacusia / pain / panic/anxiety and all that stuff, no suicide pondering, just healing YOU.

4) I don't require any payment or anything, I just REALLY WANT TO HELP YOU with the healer things I have, so please just let me help you and you can get your life back.

5) Like if I had known there was "me" (a year or like 18 months later I mean), if I had known there was this me, when I was in my worst place/phase in my life with the ear ringing/family stuff/death an all, if I had KNOWN someone like me I would have tried to ask this person to help me.

6) It's the hyperacusia that causes the madness when everything hurts one's ears and you like get "into your head" to try to stay away from the outside noise since the world has become too loud to bear it.. and u know when you TRY to get into your head to be safe there, then in your head there is the tinnitus that keeps on blaring away... So it really HURTS when you've got nowhere to go and like just relax (in life)...

7) I've asked you several times, but I don't remember: have you tried benzodiazepines?

8) I know you're wary of ototoxic meds, I was too, I feared them for my life and didn't want to take anything, and I still do cross my line on SSRIs and that kinda stuff. BUT benzodiazepines have really helped me when I was just like you know pondering suicide all day all night.. the T/H hell phase lasted for like I dunno 6 or 12 months?

9) I had the same grandma things going on and they've been going on for a while but I just try to cope with benzodiazepines+lyrica+opioids. Like ear issues are horrible but when you add some family things and mourning and all that then it is just less hope (hopeless).

10) Do you have pain from the degenerative disc thing? I'm same age as you and I have the Degenerative Disc Disease thing and bulging disc (but in my back, not neck), ye pain is horrible

11) Have you tried different opioids in their own, not IV with anesthesia meds like you were given in hospital when your T got worse?

12) I know your tinnitus got worse from ototoxic meds so like we don't know if it was from the anesthetic med they gave you in the hospital or was it the opioid? Because the Propofol that they use in anesthesia to make you sleep etc can make people's ear ring for awhile. I know opioids too can cause some ringing for some people, I was real scared of opioids too (because I didn't want to ruin my ears more).

13) If you could order the papers from your hospital we could know which opioid and which anesthetic medication they gave to you. I can help you order the papers, it takes only a few days, but I can like come and write them with you, and when we get the papers we know if it was the Propofol or something that they gave to you and which opioid they gave, so you don't have to eat that opiod but maybe try some other opioid because there are other ones to choose from

14) Have you like ever got a prescription for like codeine/buprenorphine/oxycontin to take at home?

15) When my back pain started and got a prescription for opioids at the same time I found one "cure" for hyperacusis and it was them opioids!!! Like it got my life back, my ears didn't HURT all the time, and it was so weird but they made the tinnitus more bearable

16) And since you are in that horrible place where it seems like there is no help, no cure, then why don't you just try one or two more things? It can really get better, you just gotta push it through like 1 second at a time 1 minute 1 hour 1 day.

17) I remember when I was in "there" and I got some 6 hour benzodiazepine prescription, it was really weird because I was living my life like 6 hours at a time. For 6 hours it was GOOD, I didn't suffer all the time and it was just not "hellish", I could live for 6 hours but then when the medication stopped I was back in the tinnnitus/hyperacusia hell and you know... Just lived 6 hours at a time?

18) But now later I understand I should have just REALLY eaten the medication every 6 hours and just live and not ponder about suicide all the time and be in that really kinda place. Should have just gotten a prescription for some longer lasting medication like diazepam.

19) Call it a Christmas gift I can give to you, I have to help you. I'm the best self-made T/H specialist in the whole country.

 

Usually over time. It won't just stop ringing all of a sudden, rather it will be a very slow fading. You will have setbacks and spikes along the way.
I don't know about recovery stats for drug caused tinnitus, but a vast majority of acoustic trauma tinnitus does improve over time, lots of time completely fading away.
Recovery for acoustic trauma tinnitus is 1-2 years, but sometimes even 3 years.

I had very bad tinnitus 13 years ago after exposure to an incredibly loud piece of machinery for 45 minutes. Like lots of people here, I didn't know anything about tinnitus, and basically never heard of it.
It was screaming loud tinnotus with ear pain, fullness and sensitivity to noise. It completely faded away to zero in about 2 years, so it can happen.

 

And it's like a saying or something, but people whose tinnitus gets better they don't frequent this forum anymore. Users who haven't signed in fora while are not dead, they just got better in tinnitus and got their lives back.

When mine got better I just didn't read this forum anymore, like it's true when you will recover from tinnitus/hyperacusia/pain, then you just continue your life and don't come here "as often", but do other things in life.. this forum is like some kinda church or some kinda state of mind.

 

Would you know whether it makes T worse in a minority of the patients?

 

I've noticed from success stories on this forum that people who tend to get better are those that are very proactive in trying literally everything under the sun that "might" help, and then start experimenting. Often it takes dozens of attempts at various things just to find 1-2 things that work. It's often a fairly long period of trial and error, and even when something is found that "works", it may take several months to get the full benefits.

But if a person can find a "handful" of things that help, and give it time, then the odds of significant improvement go up significantly. Who knows, maybe in the end the best "thing" of all is time. That refrain keeps coming up again and again--after 12 months, 18 months, 36 months, etc., a lot of improvement can be experienced. As I mentioned in an earlier post, patience was key for me after I started noticing very modest improvements at about the 8-10 month point.

I don't think that's the case with @Jemina either. Just my gut on this, no intellectual answer for why I feel that way.

 

I don't think anyone knows. But if it is a symptom generated by the brain, perhaps by the lowering of auditory thresholds, then perhaps in some cases they can reverse. I don't mean to imply it happens for most people but I conducted a very thorough analysis of the literature and looked on many forums in the first year I had it and it became clear that even after a couple of years it can go away. In what proportion of cease is not clear at all

 

You could be right about the people who try everything, but they could also be the people who are more likely to return to post an update. From gathering stories elsewhere as well as here in some stories people say as get they more used to it they stop thinking about it as much, and then it seems to follow, in some cases, that it starts to get quieter. Disclaimer –a) this is not to say that it is not completely a natural to be stressed about tinnitus and in the case of loud tinnitus that is 10 times more the case and b)obviously it is not the case for everyone that when they stop thinking about it quite so much it gets quieter.

 

I am so sorry you are suffering so much. That sounds horrible. I wanted to ask you if you have tried any supplements or medication for depression. If so, what were they? I'm wondering if perhaps there is something that would help with the mental pain and if it could perhaps lessen the "loudness" of the tinnitus.

 

I think it’s fair to say it’s a total crap shoot.....which is what makes it a total mind ****.

 

I’m hoping that @Jemina is ok?! x

 

And how!! @Bam..... turns you into an anxiety ridden mess.... an exhausting and very sad way to exist all because of such a f****** pointless sound!

 

I don’t know what else to say that already haven’t been said on this thread? I know you are in your own living hell at the moment, many of us are, it’s a bloody hard road to travel is T.

There are some promising things coming out in the next few months/years that could help lower the noise even diminish it completely. You’re 6 months in so things could change for the better naturally, T is volatile and unpredictable at times, you well could have it decrease by itself.

Having been on the other side with somebody committing suicide, it has many devastating ripples that hits every part of your mind, body and soul and I’m still feeling the repercussions of that every single day (this is purely selfish thinking on my part btw I know this) the choice is yours all i will say and we don’t know what tomorrow will bring.

I know it’s just words but try to stay strong buddy, fight on.

 

Could you tell us more about your DYI therapy, please? Was it something you planned (pink noise, etc.) or just 'living with normal everyday sounds' and trying react less and less to them? I'm very interested in because I think I'm now at the same stage as you were before therapy. I haven't hyperacusis with pain or similar type, just an anxiety reaction to sounds and fear they are just too loud. And really, really a lot of spikes from not-so-loud things whose doesn't want to subside usually.

 

Give it 2 years, with precaution... guaranteed it will get better

 

White noise when sleeping, and slowly working my way up to sounds that bothered me. I'll give you an example, I used to be bothered by the sound of tap water running, so at first I'd run it at the lowest setting and only for a short amount of time. I slowly increasing the level and duration until I could use it at full blast with no issues. I'll give you another example, the sound of the oven timer chiming, what I did was at first I'd stand quite far from it when I knew it was about to go off, and slowly but surely, I'd stand closer and closer until I could be right next to the thing without any discomfort. Just take it slow brother... Things will improve.

Best wishes,
Ross

 

If the spikes are your body's way of telling you what to avoid in order to promote healing (similar to the pain mechanism for people who break their arms), then then experimenting with that DIY stuff has the potential to not only interfere with your healing, but to also make your T worse. Goes without saying that it works for some people. Given how horrible T is, is it really a risk that would be worth taking?

 

I think my body is telling me I should avoid almost everything.. Even the working fridge or sounds of falling rain is giving me discomfort. I'm 21 and I just can't just sit inside home, I've got school and work. I'm trying to protect myself from louder noises, I started wearing earplugs when I'm close to busy road, sometimes in supermarkets, etc. but even after washing dishes or showering I've got spikes. After louder impuls noises like slamming doors or broken dish I have new tones and louder T. To avoid it I should just stay in my room and wearing earplugs even at home, because of neighbour who can start drilling or smth.
Sometimes I really want to just sit in my room, close windows and play quiet music and wait even a year or two for improve, but at this stage of my life I think is unfortunately not an option.

I have tinnitus since 2013 but hyperacusis only since August 2018 and it's really new thing for me. I feel I have to just do something to improve this sensitivity because it's scarying me now, even if I'm dealing with T pretty well.
I think my mind plays big role in this whole thing because hyperacusis started when I'm started to think "hmm, it's loud here? maybe it's too loud for me? should I go out? can this sound hurt me?". But maybe is just coincidence, hard to explain but my mind is pretty good in telling myself "You definitely have this illness and it will never go away". I've found about it many times and only when I stoped thinking and giving him power - they subsides.

 

@Jemina I am so very sorry that things have come to this for you; I know this malady is horrendous. I hope that you end up doing what is truly best for you.
If you decide to continue using TTalk you will be very welcome here, period. Please do not feel any pressure at all.
Sending support and best wishes.
Manny

 

Same here. I switched to baths, then eventually I was able to switch to showering while wearing earplugs.

You could keep earplugs in your pocket and put them in as soon as you hear drilling.

Those are the noises you will want to protect against, even if you decide to go ahead and try to desensitize your ears.