I Don't Know How to Continue

For @Christian78 and anyone out there who is thinking about suicide... just think how silly you'll feel in the afterlife when a month after you depart someone finds a cure. Or a year. Or two. Even 5 years.... A cure seems pretty likely in 5 years right? There's a lot of people working on it. Of course there are no guarantees... but life doesn't offer those for anything. Can you put up with the T for 5 years, knowing you'll have another 30 or 40 T free years afterwards? I know I can. I hope you can too.

 

Hang in there Emmi. The first few months are terrifying, but believe it or not, you will acclimate to it. There are lots of organizations working to treat hearing loss and T. I'm confident relief will come for us one day...hopefully soon.

 

Hi Emmi.

I first got tinnitus in my mid-20's and even though at the time I thought it was horrendous, I did habituate to that and after a year or two things were easier. I got a masker at the time (late 90's) that was all that was around. It was an in-ear masker, like an in-ear hearing aid but it put out white noise only, which I could adjust the frequency with a small dial, so that it could match mine even if the noise changed a bit. Mine has always been a high frequency T though. And for 15 years I was fine like that.

My new problem started when I had some treatment a couple of years ago that 'stimulated' my brain. The old tinnitus went from being in just one ear to being in the middle of my head and at a much louder level.

Anyway, just make sure you take lots of vitamins and nutrients that support your healing. Here is a list here (but do NOT take such high doses as per the list to start with, you must build up slowly and I would advise seeing a naturopath to ensure you don't do too much) http://www.lifeextension.com/Protocols/Eye-Ear/Tinnitus/Page-les.

You can get something to help mask as you sleep if you find some mp3's here that help you (there's downloads somewhere on this forum). Don't buy the cheap cordless sports ones as the speakers are huge and you can't sleep on them. These ones are ok though.

http://www.ebay.com.au/itm/Acoustic...db0bef&pid=100009&rk=6&rkt=10&sd=262587187053

http://www.ebay.com.au/itm/Breeze-S...hash=item2101ae7f20:m:ma04XCaH2PkH3lSIA11PbDw

 

Hey Mike!
You are not alone, thanks for being strong and keep posting supporting each other.
never give up, right now there are more studies and trials, so hopefully sooner there would be something for us.
good things come for those who wait!
lots of hugs brother

 

@Emmi
i totally relate to you.
my life was a a true blessing, even that i have had big problems in the past.
i totally never expected something like tinnitus to happen to me.
and it can be a dream crusher... if you let it.
i know its diffcult to control it, or stop having an emotional reaction to it.
after 7 months im totally in a better place.
i go out with my friends, spend a great time with my family, cook for myself, spent time with my dog.
watch movies, work on my art... life is so much better right now that in my initial nightmare.
i accept the noise now, and i accept that this my life now..
once you do, peace returns and you will be able to focus on things you can do.
dont give up and give it some time!!!

plus never give up on a cure, there are more studies right now, its a exciting moment for tinnitus and hearing loss 2017 is a big year for breaktroughs BUT in the mean time, dont be hard on yourself, enjoy your existance and know that even that tinnitus is shitty, there are a lot of things worst than this, you are still able to do many things and achive many dreams, just give it some time and be kind to you self, you have my support and everyones support in these forum.

 

Hi @Christian78 - good to hear from you again. About LLLT, or any other therapy in the broadest sense, it is difficult for me to suggest anything as there are - as we all know - no proven mass-market intervention/drug/therapy that works towards the reduction of symptoms of tinnitus. So it would be irresponsible of me to recommend any approach to take - especially if it concerns drugs that come with side-effects.

In the case of regenerative medicine (incl. LLLT), I can say, however, that side-effects are near zero and not permanent. So the "only" thing a person stands to lose in taking such an approach is money (which of course is also significant variable for most people). About the therapy as practiced by a particular laser expert in Norway - or any other country where audiology is not used for tracking progression - I can say that such clinicians are applying the therapy blindly (which in my opinion is not the correct approach to take). Dr. Wilden is as far as I know one of the few practitioners of LLLT where an audiometric assessment is made (as part of the therapy). The point of the audiometric assessment is not to show an improvement in hearing, but, to show that the therapy is working (by showing an improvement in hearing). The difference may seem subtle, but, there is a difference. And it is for this reason that Dr. Wilden is perhaps the best doctor out there (in relation to LLLT and inner ear disorders). He also uses audiometric assessment up to and including 12,5 kHz.

However, LLLT has to the best of my knowledge never been continually and reliably demonstrated to work against tinnitus. Either it doesn't work or the patient enrollment numbers were too small to identify sub-group tendencies. Or the etiology of patients were poorly chosen. Or perhaps the laser protocol followed (incl. dosage) in the various studies was too asymmetric to demonstrate efficacy. Regardless, we don't really know if LLLT works against tinnitus. We do know that it works towards restoration of cell function (incl. also inner ear cells). So that much is known and has been reliably demonstrated in the scientific literature. But tinnitus is a different beast to deal with.

My only point of criticism of Dr. Wilden is that he now is practicing in Ibiza - and - to the best of my knowledge, the audiometric assessment is no longer of the same quality it used to be (when he practiced in Regensburg, Germany).

Later this year we may see further information on AM-102. The Pittsburgh scientific community is in reverse gear at the moment (i.e. SF0034, RL-81 and Knopp Biosciences). So... at the moment AM-102 is potentially - and for a long while to come - the only potential treatment on the horizon. However, having AM-101 difficulties is not going to make the life easier for a clinical stage pharma company like Auris Medical. So in a worst case scenario, AM-102 may also end up seeing delays - but that is purely speculative on my part.

So... if I were the worldwide tinnitus community right now, I would probably go the TinnitusTalk newsfeed and rate that post on AM-102 that was released in the later part of last year (in order to create some awareness).

All the best to everyone.

 

What's going on with SF0034 etc? Why are they in reverse?

 

Hello guys,

thank you for your responses! It really helps to read that others struggle with this too and still continue to fight, even though I sometimes think it's a lost battle we are fighting for.

@Christian78, I am sorry to hear that, it seems that it has hit you very hard. It certainly needs a lot of strength to endure that and I can understand your thoughts of giving up.. as I am asking myself the same question. But what keeps me personally going at the moment is the same thought as mentioned before.. what if I give up and the next year there is actually an effective treatment? We don't know what will happen. The important question is, what can we actually do in order to speed up this process? I guess raising awareness is one big point here and the other one is money! So instead of killing ourselves we might try this route? I really believe and this is ironic, because that is actually what we have lost, but we are way too silent! Nobody sees how much pain this is causing.

 

Dear,

All tretments that were tried have failed, scientisct ass lost afront of tinnitus, they dont have idea what to try next and if they find out they will need 8 years before that product comes to market.

I spoke with Swedish scientist who is leading Swedish team and with president of EU tinnitus awerness who is leading europe team, also former president of neurologist in Europe.... answer is same, there is no golden bulet like a cure, and second there is minimum 10 diferent type of tinnitus and so many subtypes for each and each react diferently so if they find something it may be ok for 1% but then rules are simple when they do study they find out that medicine is inefective for 99% and it is abondened. On other side is loby of psikologist, hearing aid producers, therapists, producers of noise machines and so on...

Chance is no chance. If they make VNS that could be effective no one would get it as it is expencive, Sweden took 260 000 arabs last year, in 7 years we went form 9 million to 10 million of people. Now medical system has crushed down, you must wait 6 months in line to do MRI. To add to it doctors have become lousy, too many patients. 5 years ako in city Sodertelje were more people from irak and afgenistan than in entire USA and Canada together.

Now, problem is that those nations came to Sweden and they want to enforce their way of life (like running after girl on street and offering money for sex as womens are just object that should be used and should not have rights). Some idiotic organisation called UN say we should take more, be more solidar with refugees, I say ship them to USA and Russia as they made war in their respective countries.

All this drain so much resources to fight raging levels of crime (a bomb was trown trough window on 1st floor on a buliding 50m away from my building killing a guy and injuring some other members of that family. Police is spread like small peace of butter on bit peace of bread, protecting Swedes from being raped by muslims, protecting immigrants from swedes who burn their homes, and protecting from general crime, illegal immigration and so on.

All this require so much money that we are left to die off, they are not investing money any more in something so complex where there is no single tretment, but minimum 10 diferent, so they just GAVE UP, and they say they are trying to make categories of tinnitus that will take minimum 5 years. NO tretment will work for all. It is simple truth.

As pope said we are in war against islam in Europe. It is sad but truth, and in war sick people are not important.

 

Dear there is some doctors that do real compleate hearing assesment.

http://docdro.id/FHZ7hCO

Lady in Norway does 5 day tretment with 19 diferent lasers 3h per day, price is 100 euro per day + 50 euro is a room she has (with breakfast). She promises she can kill hyperacusys but for tinnitus she can help hearing specily on higher freq.

I dont know i just dont want to die. I dont know... i cant cry any more cos that stress also increases my tinnitus, i just dont want to die, but my life is dead, i mearly exist as shadow of what i was...

 

My T is getting so worse I dont know will I be able to live 1 year, not to mention 5. With so much meds i will definitly not live 30 years after. I am white my body is falling apart , tinnitus is meat grinder.

 

@Christian78
There's also a swedish laser clinican in Hovmantorp named Mikael Zazzio. It's closer to you than the one in Norway. I see on his webpage that the treatment period for this fall starts September 20 and there is no spring treatment next year. So if you want to go to him you have to decide and book soon.
http://www.alir.nu/

 

@Christian78 , I am so sorry to hear that, really. I can only imagine how hard this must be, mine is quite mild, but I still struggle a lot. I also wouldn't know how to cope with that and I truly understand your thoughts. But that is why you can't just accept this.. we are so left alone with this problem and nobody cares! "learn to live with it" and that's it.. but really we have to stop accepting that and start acting. Research is the only hope, I believe. People need to understand that this is a serious matter, that is why I would like to start a Crowd Funding Campaign. I have no idea if I will be able to make that HUGE but I will try. And for this purpose I would like to ask for your help? Would you be willing to take part in an intro video for the campaign and tell about how much the condition is affecting you and your everyday life?

 

yes that's true. And yes there are various reasons why someone can get T. But the majority of people do have hearing loss related T., that is why one approach could be investing in research to cure hearing loss in order to get this way a cure for T. as well. Another promising drug is SF0034, which is similiar to Retigabine with less side affects and Retigabine worked for quite a few people with different causes. So I think there is hope.

 

I agreee, retigabine works on me still but 20%, it had 100% effect for first 4 months

 

I dont like to be in videos

but here is perfect video that explains tinnitus+hypearcusis

"I have tinnitus and I want to die"

 

I spoke with him, he wants 800 crowns per tretment for 20 tretments, and lady in norway told me he definitly dont treat every day, not he has qulity as she has. She knows him personaly. He is not using laser tech as she does, so if i used him i would pay 800 km plus motel 500, and for her i pay 1000, tretment is not 50 minutes but 3 hours with 19 diferent lasers in same time depending on ones hearing chart, and you get room there for 500 crowns and breakfast inclooded. I consider her much better , and 5 times cheeper.

I spoke with Michael, he changed his surname for some reason and there are speculations about what he does. He did not proved nether one of his experiments to be effective not he tried to prove. For me he is fishy.

This lady has 4 clinicks and people all over world are coming to her. She is sure 90% she can eliminate hyperacusis and that she can help a lot for tinnitus and hearing loss...

 

@Christian78
I see. I hope you find some relief in Norway then.

 

My warmest thoughts to you @Christian78

 

There actually is research going on all over the world - Keyzilen (AM-101) From Auris Medical appears to be promising.

 

I thought AM-101 was stopped because it does not work? does anyone know if VNS is going to help I cant get the video to work on ata.org they just talked about it on Sep. 13th. I called them but just get a recording.

 

AM-101 failed to reach its endpoints in a Phase III trial. There's one more to go, but it is not viewed as particularly promising at the moment.

It wasn't stopped. A second phase III trial is on-going.

 

so why are they still running it if they already said it shows that it does not work
I cant believe they cant cure this or at least something to shut it off.
I dont know how to deal with this much longer.

 

@Emmi

Hi Emmi
Your story is a familiar one for most people that have noise induced tinnitus and I am sorry to hear of the discomfort that you are going through. However, noise induced tinnitus often improves with time and with the right treatment although it may not seem like that at the moment. I have some suggestions for you that may be of help and hopefully your life will improve. Before that I’d like to give you a little background on tinnitus that you might find helpful.

It is most likely that your tinnitus didn’t come on suddenly although you probably believe it did. I suspect that you have been going clubbing quite often in the past where the music was played loud and when the gig ends and you go home your ears have probably been ringing? If I am correct by the next morning or over a couple of days your ears settle down and the ringing stops?

When a person’s ears start to ring after loud noise exposure this is the beginning of tinnitus, and a warning that one’s ears are in distress. Often the ringing will stop after a few hours or after a day or so. If a person persists subjecting their ears to loud noise music etc, then one day the ringing will not stop which I believe has happened in your case.

If you have been listening to music through headphones attached to your cell phone or mp3 player etc, and the volume is set high, this will also put your hearing at risk and chances of developing tinnitus is doubled if not tripled due to loud noise.

In my opinion you need treatment for your tinnitus and its possible you also have hyperacusis, sensitivity to certain sounds? If this is so then one of the best treatments is TRT (tinnitus retraining therapy).

I don’t know what part of the world you live or if you are able to get this treatment but that is what I feel you need. TRT has a good success rate for helping people with noise-induced tinnitus. You will need to have a word with your GP or ENT Doctor to find out if this treatment is available.

I will paste a link below and advise you to read the post. It is long but please read it as I think the information will help you. It is titled: An Introduction to Tinnitus. If you listen to music through headphones at the moment then I advise that you stop doing so even at low volume.

I wish you the best of luck and hope things start improving for you soon.

Michael
https://www.tinnitustalk.com/threads/an-introduction-to-tinnitus.12100/

 

@Michael Leigh

Hi Micheal, thank you for your answer. That is indeed the case and I have completely ignored the signs of my body and just thought that it is kind of "normal" that your ears ring after clubbing. Never gave a second thought to it.

And now I feel like my life is destroyed.. I did a lot of mistakes concerning T, went too late to an ENT, he didn't prescribe me steroids and also didn't tell me to avoid noise exposure.. just said "don't worry, it will go away".. I was naive enough to just believe it and now I feel so horrible because I might have been able to avoid all of this.. but I am just too late now. Now it feels like there is nothing I can do, except accepting. But how can you possibly accept something that is so torturing?

TRT is probably a good advice and I was told about it from most of the doctors, but I tried noisers already and I felt like my T became even worse. I think there must be many people out there who actually can live pretty good with T, because otherwise this problem would be addressed more publicly. But somehow I really can't cope. I used to be a very positive mind, but now all of that is gone. I am not myself anymore and I start to think that I prefer dying over living a life with this torture.

 

Dear do not blame it so much, cos for some people those steroids make it worse, for some has no effect. Problem was that you have been devastating hearing cells, and then if we say you had with birth 1000... with years you fel to 700, but with each demage you killed some number, strong 3 concerst and you fell on 500, and more music so 300... so now you have maybe 250 and you know that loud noise can kill 20, or explosion can kill 30-50... and you dont want that to happen, so you have small number of hearing cells and they dont grow back (except with birds) and you dont want to ruin those you have...

My tinnitus went up 28 times, my hearing went down too, why, how , where... it is hard to know why, maybe becouse of meds i use, maybe it has something with stress, maybe maybe maybe... no one offered me answer except said maybe...

This life is hell, try to live every day you got that is good the best you can... if tomorrow is bed let it be bed, dont let yourself be alone, but isolate your bad day if need be in a bad... know when i tell you that my tinnitus went up 28 times and habituated almost 28 times, every time it hits me i fall, sometimes even a week in a bad in a dark... my mom has a type of cancer she dont want to get to treatment cos she wanna die before me... she seen me suffering...

dont let yourself complity, tinnitus is LOVE killer, i know it as i am very romantic and emotioanl... even ph. d. C. Cederoth told me it is love killer (he is swedish resercher who is working on tinnitus and he has tinnitus).

Separate every day for itself. Forget on your life. It was not easy for me to release my life of digital telecomunication programing and computer engineering... but i had to... live for a day and live it best you can

 

Hi Emmi,

You are experiencing anxiety, and that is a perfectly normal human response.

When I first got tinnitus 6 months ago, I googled and googled all night, then went to the ENT hoping I had ear wax and viola, that would stop the noise. He checked my ears and said "all clear". Basically, he told me right then that I was on my own and I had to learn to live with it. And that is really the treatment for this condition - you learn to live with it. The first - and most important - step is to understand that you are not the only one suffering. Barbara Streisand, Steve Martin, William Shatner, and millions upon million of others have it too. In fact, the ENT said it's a very common condition and he has many patients who have it.

My suggestion to you is to stop fighting it. If you go this route, you will drive up your anxiety level and it will not help. Go about your life and do not let it stop your plans and dreams. Just refocus your mind and stop making it a priority in your life.

Remember, you cannot control tinnitus, but you can control your reaction to it!! Re-read this sentence a few times and let it sink in!

 

I'm totally in the same place right now. I had good days a couple of weeks ago when I thought I'm lucky, it gets slowly better and I can have alive again, I even talked about marrying my girl friend, having kids. But then it hit again. Last night I woke up to it, being louder and more piercing than ever. I got kind of a panic attack. Now it's slightly better but still at a level where I ask myself if I can ever be feeling normal again. I'm at the point where I ask myself if I shouldn't break up with my girlfriend to keep any harm from her.

This disease is so evil, it's destroying you slowly and inevitably. It's mental cancer.

 

Wow this thread is really scary. Feel terrible for all of you suffering out there. In some ways it's good to read this though. Sometimes I find that I get lax or I ease up on paying attention to being careful. Reading this is a good reminder to get back to taking care of myself and the ears . All the best and prayers to all

 

@Emmi

Hi Emmi,

If you haven’t read my post: Introduction to tinnitus, in the above link then I advise you to. If you have read it then I advise that you to read it again and this time PRINT it out and use if for future reference. It was written for people new to tinintus and you might find it helpful.

Please do not dismiss TRT (Tinnitus Retraining Therapy) It isn’t something that you can do yourself or simply wearing: White Noise Generators. The tinnitus counselling which is done with a Hearing Therapist/Audiologist trained in this field is a very important part of the treatment and shouldn’t be overlooked. Wearing white noise generators alone without tinnitus counselling a patient will not get the full benefit of TRT.

If TRT is available in your area then I strongly advise that you try it. It isn’t a quick treatment and when administered properly many people have good success with it.
Best of luck

Michael