So, Now I'm 28 and Have Hearing Loss, Is This Guy Saying I Now Am Losing Brain Function Too?

[Path Maker]

It surely is a noisy world, Stacey. It sounds like you're doing everything possible! I myself have had to give up vacuuming! That ... sucks. Well, it no longer sucks (the vacuum). It is just TOO DAMNED LOUD, even with plugs. I am looking into an old-fashioned carpet sweeper on amazon, and a broom for the wood floors. I think the hardest part outside the house is the unanticipated noise - like kids who suddenly shriek in restaurants and car alarms that go off as you're walking across a parking lot. Just stuff to cope with and adapt to.

I am of course not thrilled that this is my new reality, but I've learned to be more flexible in life over the years, and also that life changes constantly, and also to have a sense of humor (even the tiniest little bit when you don't feel like it). And I think of people who lose a limb and get on with it - they have a new reality. And others, with different problems, too.

But yeah, I so agree with you. Very noisy world. And I see you live IN the city. I hope you can do your best to soundproof your apartment as much as possible. The best to you!!

 

[matt89]

"Sometimes"...? The following statements from you seem more general in nature:

• "Where is the cure? We live in the 2016. Don't want to wait any longer."
• "Dear scientists out there. Please help us! We had normal lifes and are suffering now one day after another."

There is no "sometimes" in the above statements: those are pretty generalized statements.

Right, it's a generalized statement. But in moments where it bothers me I just want to get rid of it and then I'm posting purely intuitive. I don't think in such a situation whether a statement is generalized or custom-tailored to the actual T intensity I'm experiencing.

Keep on digging your own hole deeper and deeper.

I'm doing that. If you want you can invite me to your private facebook group now because we're on the way to become best friends
All joking aside. If you add me to your group I will take the time besides my full-time job to publish the newest information of that facebook group here. So you don't have to invest your time to do it.
What do you say?
Think about it.

And... folks here have no problem spending hundreds of dollars on appointments with tinnitus-specialists all over the country (to no avail in 99% of cases). But a click with a mouse button to rate a post on Facebook seems to cause problems for a certain majority of the members.

Yes but there's a difference. When you visit your ENT everything is private and your ENT has a duty of confidentiality. When you share/like a publicly viewable post on facebook all of your facebook friends (subscribed to you) will see the post and ask themselves why you're sharing/liking information about tinnitus. The probability is high that they think as a result that you have tinnitus. Most people with tinnitus don't want to tell others (except some of their closest relatives) that they have tinnitus either in order to cope better with the condition or because they just don't want that others see them suffering.
Because of that you can't expect much sharing/liking on facebook from people who have tinnitus.
I mean https://www.facebook.com/TinnitusHub has 4499 Likes. That's nothing compared to the member activity here. One example where you see the difference between facebook and a forum where you can post anonymously under the respect of your privacy.

 

[attheedgeofscience]

You think you're something special with your private facebook group hiding information unless some members on this forum are interested in your new stem cell information. So then why don't you stay in your facebook group instead of fooling around here with a private group on facebook where you publish secret information not available for everyone. That's a logic I am very allergic to.

Listen: I published my stem cell story. The framework, concept, and ideas are all there (incl. the links to the stem cell clinic I was myself treated at - and ready for anyone to follow-up on if they wish). That story has now been viewed close to 50,000 times (split across the two threads):

About twice a year, I am in contact with the clinic just to hear how things are going (and get the latest "gossip" from the stem cell industry). Despite 50k views, so far, the clinic has had just one person going there. So does the information I share really matter? I think not. If you really wanted to, you have all the leads you need.

Then again, the above is not surprising: the thread on the AM-101 trial is full of people skeptical of a new procedure and worry if they might end up with worsening hearing (because they heard "someone on the Internet" tell them that it might be dangerous). Of course, I cannot help but wonder why so many people would pay money for a book with the title "Tinnitus Miracle" not to mention buying the same vitamins from 10 different brands (just to be sure that it doesn't work for tinnitus).

As for stem cells, I have shared information on another forum related to uveitis. In my case, I am 100% cured after intervention with stem cells. With such an impressive result, and with such poor alternatives to treatment for uveitis, you would think that members would be ecstatic of such news. But no. No significant interest. In fact, if members post a picture of their pet in a group for chronic diseases, it will get more ratings than my high quality information.

Lastly, I regularly get requests from folks who need my help: not long ago, a member of TinnitusTalk contacted me because his mother might be suffering from cancer and somehow thought stem cells could help. Of course, I replied to the PM and ended up discussing various alternatives (e.g. cancer killer stem cells - something I know very little about, as does your local GP incidentally). About an hour of my time was spent along with engaging my network. Never heard from the guy again.

 

[attheedgeofscience]

Yes but there's a difference. When you visit your ENT everything is private and your ENT has a duty of confidentiality. When you share/like a publicly viewable post on facebook all of your facebook friends (subscribed to you) will see the post and ask themselves why you're sharing/liking information about tinnitus.

People in this world share just about anyting on Facebook these days. So why shouldn't they share the high quality content from a pharma company like Auris Medical?

At the end the day you don't have to convince me - I know the answer. But, I am just telling you the facts in a hope that you might actually see the big picture.

All joking aside. If you add me to your group I will take the time besides my full-time job to publish the newest information of that facebook group here. So you don't have to invest your time to do it.

No thanks. I am quite capable of sharing the bits and pieces that matter myself.

 

[Off-Kilter]

What is the value of negativity?

I wouldn't call it "negativity". I know the value of optimism, but there's a catch.

The catch is that you can be "positive" about two contradictory things. I can be "positive" about my current goals, and I can also be "positive" about finding different goals now that I have tinnitus. I have no idea which one to be positive about, and the contradiction leads to huge negative feelings.

That's the value of objectivity. I'm testing whether I am actually mentally slower now. As far as I can tell, I am slightly mentally slower, but only when I'm thinking about my tinnitus. So now I need to find out whether I can stop that.

 

[jdjd09]

Can't you take unpaid leave off? I mean, if you are wanting to quit anyway, or think you'll get fired, then it is better to try to do something (seeing the audiologist) rather than just not do anything and just getting unemployed?

I don't frankly know. It's tax season, so no, they are not going to let me off work. I could attempt to take medical leave, but how? I did it for a week when I finally figured out I could do it. Take it again, for the same issue? How? I really don't know.

I don't have a great manager. Everyone hates them and they are very difficult to talk too. Going over her head would make things worse too.

It's an all around shitty situation. Maybe when tax season ends I could, but pretty sure they turn insurance off I think when going on unpaid leave.

 

[jdjd09]

I hear you about the high rents, jdjd09! Well, one thing at a time! Perhaps you can seek out a quiet house or apartment share with a roommate or two to cut costs. People who are also looking for quiet. You could always post an ad like that or answer one if you find it. There surely are others who like quiet housing. Hope you're having a good day!

Roommates would be worst. I'm not a "normal" person, I am going to be working hard at a computer science degree. People rarely have a tolerance for this much work. Only option may be living with parents or on my own. I see no way of living with a roommate. Peoples plans change too often in this life and don't have close enough friends to live with and trust who are looking for apartments.

 

[jdjd09]

Thank you !

I agree with Ateos too : we must be honest with ourselves and with other members.
This journey is extremely difficult but most people succeed and become stronger. Some don't however, and we should never leave them behind.


The tinnitus was mild at first. It got worse very slowly over the years... Because I didn't always want to admit I had a problem. So I exposed myself to loud environments sometimes. But I was still ok with T until last December. About the same story for hearing loss.
You care about your ears, and that's great. I didn't when I was 18. You will protect them and that's what matters.
If I remember well, your hearing loss is mild, in just one ear. Many, many young people have it worse than you but don't even realize. You have the privilege to be fully aware of your condition. It is a privilege because you can protect yourself.


I had to give up on many things. That was tough. It still is. That doesn't mean my life was screwed :
- I got a degree
- got a job
- met a fantastic girl
- made fantastic friends
- went into extreme sports
- we travelled a lot, I mean a LOT, all over the world
- I wrote books, went into photography and filmmaking

Around me, many people with no chronic disease are not happy at all. My life is not the one I wanted at first. Not at all ! But boy, I'm lucky. Now It's time for me to give up on more things and find new challenges. All the pain has to lead somewhere. Maybe I will write a good book for once

I'm currently starting a small business. So I can work from home and still make something new and interesting.


Still no hearing aids. My high frequencies are burst, but I understand speech quite well. I feel like I don't need HA for now. I wouldn't care what people think about it. I even think the new generation of HA looks cool, very futuristic !


Because the issue is not my life. My life is something bigger. I can't imagine dying now. I want to contribute more to this world.

Can I ask what frequencies you have hearing loss in (and what DB it takes to hear the beeps in the hearing test)? Is it both ears or one?

I'm glad you seem to keep going on, but I feel like life isn't worth going on now.

 

[jdjd09]

So, I've been here for 3 months or so now. Honestly, why would things get better at this point? I can't really ever get even a close estimate when hearing loss cure will come out. I get told one thing by some, and then told why others feel those people are wrong.

Yes, I'm just complaining all the time. People probably think I just want attention at this point. Honestly, Why continue? Why? Why would it ever get better? I've had health issues before (ones where I have been taking medication for years now for and may for life). They didn't effect me this bad. Now what?

Seriously, outside of a hearing aid, what will any doctor do for me? Everyone just says go see doctor, but then I go see doctor and they don't do anything ever. What is the point?

 

[Path Maker]

Gotcha, jdjd. Then I guess if you live back home, just spend lots of time at the library and eating out. Come home for sleep, then up and out again. Hopefully that's doable.

 

[bill 112]

Can I ask what frequencies you have hearing loss in (and what DB it takes to hear the beeps in the hearing test)? Is it both ears or one?

I'm glad you seem to keep going on, but I feel like life isn't worth going on now.

Jdjd would it be possible for you to consult your doctor about how your feeling and perhaps get you some time off work?And if so do you have any relatives that you could go stay with for awhile?I think you just need sometime to adjust to this and at the moment between your hearing loss,work and rent it's putting too much pressure on you?Im speaking from an experience a friend of mine JJ went through and it mirrors your current situation,scarily similar in fact.JJ was at some party with a few friends and needless to say he drank a tad too much.He eventually passed out with his left ear right in front of a big ass speaker that they were bouncing music out of.And did anybody think of moving him?Of course they didn't.Anyway he eventually came to and walked home with his friends in a pretty horrendous state.The next morning when he woke up he started complaining of a ringing in his ears and being slightly deaf on one side.After numerous ENT visits,well we know the drill there,he was left with a substantial hearing loss on one side and of course T.Nobody heard from him in months,he wasn't at work it was only later that we discovered he'd moved back home with his parents in Co.Carlow.Long story short he needed time to adjust to the whole shock of it but I remember being out with my mates at a local pub having a few quite drinks when JJ just randomly showed up out of nowhere with a big smile on his face.He'd gotton a hearing aid and yes we did poke fun at it but so did he,said he was a satellite dish or something.And that was the last time any of us noticed his hearing aid,it became a non issue after that.Hes back working in Vodafone now(cell phone network here in Ireland)and he's engaged to a lovely girl he met a few years back.He has one of those invisible hearing aids now and being honest you'd never even notice he's wearing it.JJ was in a dark place,he made that clear to us,but he gave himself time and now he's better than ever before and it can be the same for you too if you'd let it!And as for the whole brain being less functioning JJs a pretty smart guy,always was and he hasn't changed one bit ever since that night,so don't buy into everything you read online.All the best.Stephen

 

[Michael2013]

So who is arrogant?

I'm gonna have to go with the guy who routinely brags about his ratings on some internet forum:

Go to the ratings page here...

www.tinnitustalk.com/members

...and you will see that I have +2000 posts on TinnitusTalk.

But hey, this rating is what gives you the credentials to call yourself the title of Medical Pioneer around here, right? Do you put your post count and ratings on your resume, too?

 

[bill 112]

Backs away slowly.....

 

[Path Maker]

don't buy into everything you read online.

THIS.

 

[Zorro!]

I wouldn't call it "negativity". I know the value of optimism, but there's a catch.

The catch is that you can be "positive" about two contradictory things. I can be "positive" about my current goals, and I can also be "positive" about finding different goals now that I have tinnitus. I have no idea which one to be positive about, and the contradiction leads to huge negative feelings.

That's the value of objectivity. I'm testing whether I am actually mentally slower now. As far as I can tell, I am slightly mentally slower, but only when I'm thinking about my tinnitus. So now I need to find out whether I can stop that.

Okay. Now here's a gif of a puppy. Everyone likes puppies. Enjoy.

 

[Path Maker]

Ah, the infamous Tinnitus Puppy of Peace! Long may he reign and roll!!!

 

[jdjd09]

Gotcha, jdjd. Then I guess if you live back home, just spend lots of time at the library and eating out. Come home for sleep, then up and out again. Hopefully that's doable.

I don't know what is doable anymore honestly doable. If it becomes doable, I will await the next major health issue in another two years that screws my life. That seems to be the pattern. Therapist saw this pattern and literally thought that I was creating it because it was like clockwork. I disagree, I'm not doing this on purpose (creating health problems for myself). But, it's amazing.

I'm still trying to figure out what I'm going to be doing after the summer. I already pretty much decided I'm probably quitting my job. I can't take this job anymore. But, after that, not sure.

 

[jdjd09]

Jdjd would it be possible for you to consult your doctor about how your feeling and perhaps get you some time off work?And if so do you have any relatives that you could go stay with for awhile?I think you just need sometime to adjust to this and at the moment between your hearing loss,work and rent it's putting too much pressure on you?Im speaking from an experience a friend of mine JJ went through and it mirrors your current situation,scarily similar in fact.JJ was at some party with a few friends and needless to say he drank a tad too much.He eventually passed out with his left ear right in front of a big ass speaker that they were bouncing music out of.And did anybody think of moving him?Of course they didn't.Anyway he eventually came to and walked home with his friends in a pretty horrendous state.The next morning when he woke up he started complaining of a ringing in his ears and being slightly deaf on one side.After numerous ENT visits,well we know the drill there,he was left with a substantial hearing loss on one side and of course T.Nobody heard from him in months,he wasn't at work it was only later that we discovered he'd moved back home with his parents in Co.Carlow. Long story short he needed time to adjust to the whole shock of it but I remember being out with my mates at a local pub having a few quite drinks when JJ just randomly showed up out of nowhere with a big smile on his face.He'd gotton a hearing aid and yes we did poke fun at it but so did he,said he was a satellite dish or something.And that was the last time any of us noticed his hearing aid,it became a non issue after that.Hes back working in Vodafone now(cell phone network here in Ireland)and he's engaged to a lovely girl he met a few years back.He has one of those invisible hearing aids now and being honest you'd never even notice he's wearing it.JJ was in a dark place,he made that clear to us,but he gave himself time and now he's better than ever before and it can be the same for you too if you'd let it!And as for the whole brain being less functioning JJs a pretty smart guy,always was and he hasn't changed one bit ever since that night,so don't buy into everything you read online.All the best.Stephen

Did he tell you what went on besides getting the hearing aid that made him become better? How much did the hearing aid help and how bad was his hearing loss? Did the ENT's even attempt to save his hearing?

Also, how old was he when this happened and how is he now with the hearing (sound like he has job and fiance)? Also, when you say invisible, do you mean those very expensive ones that stay in your ear permanently for 6 months at a time?

 

[Alue]

@Michael2013 , I am going to try to complete my Computer Science degree there, which I enjoyed before this issue. I am unclear how I will get through classes with this issue now though. Plus, living with mentally abusive household for 2 years...

No, I haven't seen audiologist. I have looked around, but none really meet on the weekend. Costco is open on weekend, but they aren't audiologist. On top of that, I cancelled the AM-101 meetings because they kicked me out of the trial. They were just using me for money, I can pretty much tell by there attitude. They never gave me steriods, which was better idea to give first. Instead, they just pushed there trial drug to make a buck.

How will this get better for me you think? I'm 3-4 months into this issue. I question how it will get better. How will it get better?

No, they did not make any money off of you. They weren't using you for money; they spent a lot of money on you for research, but that money was wasted because they couldn't use the results. (unless you are talking about the ENT and not the sponsor Auris)

I'm sorry you got thrown out, and sorry about your situation. I've had a rough time too, and tinnitus isn't the only thing I've got going that permanently affects my quality of life. I'm not going to give a big pep talk, others have done a good job with that, but catastrophizing and blaming others isn't going to help anything.

I have read a lot of your threads and have bit my tongue. I can empathize, but there are a lot of people that have it worse off than you with little hope for improvement. In certain extreme circumstances I think someone can come to the rational conclusion to end their life, but I don't think you are anywhere near that. Instead of focusing on the rest of your life just focus on short term survival, what gets you through, and re-evaluate in a year or whenever you are able to think more clearly and objectively about the situation.

 

[Foncky]

Can I ask what frequencies you have hearing loss in (and what DB it takes to hear the beeps in the hearing test)? Is it both ears or one?

I'm glad you seem to keep going on, but I feel like life isn't worth going on now.

I have 30 to 65 dB loss in the 4000 to 8000 Hz range. Both ears. Lower frequencies are not bad (5 to 15 dB loss). Higher ones were not tested.

You're three months in. It seems like a long time but it's not with this condition, you have to be patient.

 

[Sebastians]

I have 30 to 65 dB loss in the 4000 to 8000 Hz range. Both ears. Lower frequencies are not bad (5 to 15 dB loss). Higher ones were not tested.

Did that come about through years of loud noise or through a series of sudden acoustic trauma's?

 

[Sebastians]

I have read a lot of your threads and have bit my tongue. I can empathize, but there are a lot of people that have it worse off than you with little hope for improvement. In certain extreme circumstances I think someone can come to the rational conclusion to end their life, but I don't think you are anywhere near that. Instead of focusing on the rest of your life just focus on short term survival, what gets you through, and re-evaluate in a year or whenever you are able to think more clearly and objectively about the situation.

Totally agree with this comment. A short-term strategy seems just what you need right now. Focus on getting through the next couple of weeks and months for the time being and try and implement some sensible changes in your life in terms of education, lodgings, overall health etc. Try and deal with each challenge seperately, instead of throwing everything on one pile until it becomes an insurmountable mess of problems.
how's your sleeping hygiene? What foods do you put in your body? Do you do any kind of sports? Do you take any supps to stay healthy? Etc etc.
This BS is hard on everybody here and i bet quite a few members here would gladly trade their situation for yours. I'm not saying this to make your feel bad, just realise that there's a good change you'll pull yourself out of this mess.

 

[attheedgeofscience]

But hey, this rating is what gives you the credentials to call yourself the title of Medical Pioneer around here, right? Do you put your post count and ratings on your resume, too?

Here is a challenge for you. Show me and the rest of TinnitusTalk that you can achieve either of the following:

• Earn yourself a Team Trobalt badge
• Earn yourself an Advocate badge
• Earn TinnitusTalk a new pharma sponsor
• Get a piece of tinnitus research pertaining to Trobalt or the TinnitusTalk forum shared on a Facebook page with +1 million followers.

Show me, my friend. Let's see what you are made of. Any fool in this world can be make comments on the sidelines and talk the talk, but, can you also walk the walk?

Should you fail to deliver, I would then suggest for you a badge with the description of "Armchair Critic" - I think you have earned that. So how should your profile look in two month's time - like this...

...or like this?

You have 60 days.

 

[Foncky]

Did that come about through years of loud noise or through a series of sudden acoustic trauma's?

Two acoustic traumas. The noise of the city over the years + occasional exposures (at work for instance) did not help of course. But no gigs or things like that since my problems started 12 years ago. However, I suspect that my ears have always been particularly fragile.

 

[Sebastians]

Two acoustic traumas. The noise of the city over the years + occasional exposures (at work for instance) did not help of course. But no gigs or things like that since my problems started 12 years ago. However, I suspect that my ears have always been particularly fragile.

Your hearing loss would indicate so. I'd be religious about hearing protection if i were you. Perhaps look into good supplements (magnesium etc) and healthy foods (fish, broccoli, etc) to help prevent further hearing loss.
So you haven't been to a gig in 12 years?

 

[Michael2013]

Here is a challenge for you. Show me and the rest of TinnitusTalk that you can achieve either of the following

Nah. Badges and fake points on an internet forum have no value to me. It's strange that you place so much importance on your forum ratings and badges next to your name.

Any fool in this world can be make comments on the sidelines and talk the talk, but, can you also walk the walk?

Hey now, don't be so hard on yourself. It's not your fault that you have no professional background, medical credentials, actual research experience, or real contributions to advancing medical knowledge other than being a guinea pig. If you want to walk the walk, maybe you should stop leeching off other researchers' work and do some of your own. You're the ultimate armchair critic here. All you do is provide your own commentary on what other actual scientists and researchers are doing.

The difference between you and me is that I recognize I am on the sidelines. I'm not a doctor or medical expert, nor will I pretend to be. I'm not a Medical Pioneer, and I'm not a fraud pretending to be something he isn't.

...or like this?

You sure have a lot of time on your hands. This is time you could have spent getting more information from your secret contacts and passing off here as your own contributions.

-Mike

 

[attheedgeofscience]

You sure have a lot of time on your hands. This is time you could have spent getting more information from your secret contacts and passing off here as your own contributions.

Where have I claimed something to be my own contributions?

 

[Foncky]

Your hearing loss would indicate so. I'd be religious about hearing protection if i were you. Perhaps look into good supplements (magnesium etc) and healthy foods (fish, broccoli, etc) to help prevent further hearing loss.
So you haven't been to a gig in 12 years?

I'm religious about protection now. Hyperacusis gives me no other choice anyway.
We are leaving the city and looking for a whole new lifestyle, which is a good thing and not just for T. You're spot on : I started magnesium and I'm extra careful with food, sports (running is not a good idea at the moment, it totally spikes the T), etc.

I haven't been to a gig in 12 years. It would be like suicide, earplugs or not. Last theater was 4 years ago. But I was too often in denial, so I did not always wear hearing protection when I should have. In some restaurants for instance, where the noisy background seems ok but is not. Cumulative damage is so pernicious.

(English is not my native language, sorry for any weird sentences).

 

[jdjd09]

Again, I'm interested in responding to some of the posts in here. So if mods have issue with fighting, please just delete the posts that are breaking any rules instead of locking thread. Some of the responses I have gotten here have been helpful and really would like to be able to respond to some of these posts after work.

 

[Michael2013]

Again, I'm interested in responding to some of the posts in here. So if mods have issue with fighting, please just delete the posts that are breaking any rules instead of locking thread. Some of the responses I have gotten here have been helpful and really would like to be able to respond to some of these posts after work.

Sorry, jdjd. I apologize for my contribution to the fighting here. I don't want your thread locked, so I'm stepping away from any conversations not relevant for you or this thread.

I am glad to see though that you have found some posts helpful.