Is There Any Real Hope?

[Petersi1981]

I was negative once but hey - life's too short. I have other things to worry about such as chronic back pain for the last 20 years. My tinnitus doesn't even come close now in comparison

That's nice of you...And your the only one who has Tinnitus and back problems or any other condition? there are times I cant walk for 3 weeks because my back gives out. And you know what I would take my messed up back with all the pain medication million times over if I just didn't have this 24/7 high pitched head splitting roaring in my head for the last 20+ years and probably for the rest of my life...I'm sorry if i'm negative but that's what board like this is for, When I know there are people out there like me it makes me not feel alone. Sorry if your not like me maybe your tinnitus is not an issue for you, and that makes you very lucky. I'm here to talk and vent about tinnitus not other problems (and we all have them)...

 

[dingaling]

Who said anything about being the "only one who has tinnitus and back problems or any other condition?" Where have I said that?

That's just your perception. I'm not the one being negative, but I'm glad you acknowledge that you are.

It doesn't have to be all doom and gloom....you can make a difference, you can't just rely on someone coming up with a cure

 

[Michael Leigh]

Of course, there are many doctors who don't understand tinnitus but making such sweeping stereotypical statements just highlights your apathy towards them.

ENT doctors are physicians and know all about the anatomy of the ear and I have a lot of respect for them and their expertise. They can treat the ear medically or surgically. However, most of them know very little about tinnitus. When there is no underlying medical problem causing the tinnitus which they cannot treat.A patient should be referred to a Hearing Therapist or Audiologist who's trained in the treatment and management of tinnitus. These health professionals are the people that treat tinnitus. It is not unusual to find some of them were either born with tinnitus or acquired it at some time in their life. This can be particularly helpful when counselling a tinnitus patient. They will have a depth of understanding about this condition that most ENT doctors don't have.

Michael

 

[IvanRus]

ENT doctors are physicians and know all about the anatomy of the ear and I have a lot of respect for them and their expertise. They can treat the ear medically or surgically. However, most of them know very little about tinnitus. When there is no underlying medical problem causing the tinnitus which they cannot treat.A patient should be referred to a Hearing Therapist or Audiologist who's trained in the treatment and management of tinnitus. These health professionals are the people that treat tinnitus. It is not unusual to find some of them were either born with tinnitus or acquired it at some time in their life. This can be particularly helpful when counselling a tinnitus patient. They will have a depth of understanding about this condition that most ENT doctors don't have.

Michael

I'm afraid that for even 20 years of tinnitus you are not used to it ?! What are forced to be on this forum? It's really sad. I read in some article that people, on average, get used for 3-5 years. But the statistics of this forum are frightening.

 

[IvanRus]

Celgene's stock price is dropping considerably today due to sales of two approved drugs. One drug indirectly does connect to tinnitus as it's for arthritis. Just too many side effects.

I've been to a few drug and bio conferences a few years ago, and at that time I was laughed at when I mentioned drug development for tinnitus. The common response was - we have shareholders to consider. It's always a shot in the dark when considering neuro drug development for any condition.

Every major drug company has considered stem cell research, but many large public drug companies have given up on stem cells all together. Some do use pathways like with cancer and tissue regeneration. Many smaller companies that were involved in stem cell research have gone under. The hearing stem cell companies show promise, but none of them will get funding from larger drug companies if they focus too much on the tinnitus aspect.

Tinnitus is a dirty word to large drug companies. To our disadvantage, a block buster neuro drug will be the only treatment that will help the masses of tinnitus sufferers. Stem cell treatment will only help a limited few with tinnitus.

This is incredibly sad. Is this the case only in the US or in general? Tinnitus is an indirect condition. The main issue is the restoration of hearing, the restoration of the structures of the inner ear. Then the tinnitus will go away. And blocking drugs, in my opinion, and so exist - benzodiazepines, SSRIs. But they help in part, and what, drink them all my life? this is not an option ..

 

[Michael Leigh]

I'm afraid that for even 20 years of tinnitus you are not used to it ?! What are forced to be on this forum? It's really sad. I read in some article that people, on average, get used for 3-5 years. But the statistics of this forum are frightening.

With respect your evaluation of me is wrong. I do occasionally have difficulty with tinnitus but that is the nature of this condition. I have had it for 21 years and I visit this forum and others for a specific reason. To try and help anyone that is having difficulty with tinnitus and asks me for help. I am used to it or habituated as it's commonly called. If there were not people like me, that are veterans to tinnitus how would some people learn to cope that find it distressing?

This is not to say people that are new to tinnitus can't be of help too because they certainly can. We learn from each other because no-one knows it all. There are people in this forum that have had tinnitus longer than me and also offer their help and those that have had it for less time and do the same. Many years ago when I first got tinnitus, I was helped by people in a forum similar to this. This is one of the reasons I visit tinnitus forums and occasionally counsel people on the telephone that have tinnitus. It is about giving something back and this is what life is about. Helping someone if you can without looking for any reward.

Michael

 

[IvanRus]

With respect your evaluation of me is wrong. I do occasionally have difficulty with tinnitus but that is the nature of this condition. I have had it for 21 years and I visit this forum and others for a specific reason. To try and help anyone that is having difficulty with tinnitus and asks me for help. I am used to or habituated as it's commonly called. If there were not people like me, that are veterans to tinnitus how would some people learn to cope that find it distressing?

This is not to say people that are new to tinnitus can't be of help too because they certainly can. We learn from each other because no-one knows it all. There are people in this forum that have had tinnitus longer than me and also offer their help and those that have had it for less time and do the same. Many years ago when I first got tinnitus, I was helped by people in a forum similar to this. This is one of the reasons I visit tinnitus forums and occasionally counsel people on the telephone that have tinnitus. It is about giving something back and this is what life is about. Helping someone if you can without looking for any reward.

Michael

it is commendable. after what time did you adapt to tinnitus? Over time, adaptation is improving yet? Have you taken antidepressants? What kind of secret means, about which you told?

 

[Michael Leigh]

it is commendable. after what time did you adapt to tinnitus? Over time, adaptation is improving yet? Have you taken antidepressants? What kind of secret means, about which you told?

Let me first explain a few things to you about tinnitus. It is a very common condition that many people eventually learn to live with and they are able to carry on with their life doing everything that they want to without it causing too much of a problem. There is also a serious side to tinnitus in that it can become very severe and make life difficult for some people and this includes me. I was medically retired from my job because of it. However, this doesn't necessarily mean one's life is compelled to doom and gloom.

I adapted well to tinnitus but in 2008 it increased in severity and it took another 4 years for me to habituate. I have been on antidepressants in the passed and just last week I had to take my Benzo medication Clonazepam, because my tinnitus was quite severe. I am a positive thinking person and remember a time my tinnitus was so severe I couldn't get out of bed for most of the day and wouldn't want to go near a computer much less switch it on. It is all about learning to acquire the right attitude once that is achieved life becomes easier and less problematic.

Everyone has problems because that is life. A condition like tinnitus can magnify life's problems quite a lot. If a person has other health issues or relationship problems a person's stress and anxiety levels can become very severe. This is where medication and seeing a therapist may be required. It is not just dealing with tinnitus that is the problem. It is dealing with life.

I do not understand your last question: What kind of secret means, about which you told?

Michael

 

[IvanRus]

Let me first explain a few things to you about tinnitus. It is a very common condition that many people eventually learn to live with and they are able to carry on with their life doing everything that they want to without it causing too much of a problem. There is also a serious side to tinnitus in that it can become very severe and make life difficult for some people and this includes me. I was medically retired from my job because of it. However, this doesn't necessarily mean one's life is compelled to doom and gloom.

I adapted well to tinnitus but in 2008 it increased in severity and it took another 4 years for me to habituate. I have been on antidepressants in the passed and just last week I had to take my Benzo medication Clonazepam, because my tinnitus was quite severe. I am a positive thinking person and remember a time my tinnitus was so severe I couldn't get out of bed for most of the day and wouldn't want to go near a computer much less switch it on. It is all about learning to acquire the right attitude once that is achieved life becomes easier and less problematic.

Everyone has problems because that is life. A condition like tinnitus can magnify life's problems quite a lot. If a person has other health issues or relationship problems a person's stress and anxiety levels can become very severe. This is where medication and seeing a therapist may be required. It is not just dealing with tinnitus that is the problem. It is dealing with life.

I do not understand your last question: What kind of secret means, about which you told?

Michael

In his narrative, according to the reference that you threw to me, you are talking about some drug that supposedly helped you. but do not say the names. What is this preparation or remedy? How old are you now, if not secret, do you have a family?

 

[Michael Leigh]

In his narrative, according to the reference that you threw to me, you are talking about some drug that supposedly helped you. but do not say the names. What is this preparation or remedy? How old are you now, if not secret, do you have a family?

With respect I do not mention my age or my real name. Michael Leigh is a pseudonym. Neither do I mention whether I'm married, have a partner or have a family. I don't like to talk about my work either. I am here and only want to talk about tinnitus although occasionally I will drift off this subject as long as It doesn't involve anything too personal. I have found the less one talks about their private life the better. I do not take any secret medication.

If you are referring to the product that I talked about in my post: My experience with tinnitus? I will mention it now. I use a device called Tiex. I have used it since 2011 and find it very helpful. I have written about it in this forum recently. Just type Tiex in the search box.

Michael

 

[Screamin Ears]

last week I had to take my Benzo medication Clonazepam, because my tinnitus was quite severe.

Does the Clonazepam make the tinnitus go away or reduce? or does it just reduce your anxiety when having a severe bout of tinnitus?

 

[Michael Leigh]

Does the Clonazepam make the tinnitus go away or reduce? or does it just reduce your anxiety when having a severe bout of tinnitus?

My tinnitus changed in 2008. It increased to almost unbearable levels and whilst I was having TRT treatment for the 2nd time. Over the course of 2years, I was left with fluctuating tinnitus that ranged from : complete silence, mild, moderate, severe and extremely severe. In 2010 I was prescribed clonazepam and advised to only take it when my tinnitus reached very severe levels and not to take it too often. If this drug is taken too often, the body quickly habituates to it and more of the drug is needed to get the same relief and this is when dependency can set in.

When I take clonazepam 2x 0.5 tablets it reduces my tinnitus to complete "silence". As I said my tinnitus can be silent without clonazepam but when it becomes severe I take this med to calm the tinnitus down. Last weekend I had to take it as my tinnitus was quite severe and it calmed it down over a few hours. I am taking clonazepam much less. Perhaps once a month now for one or two days.

Clonazepam doesn't work for everyone with tinnitus.

Michael

 

[pathworker2017]

Relying on external devices alone is not the way forward, dealing with T is as much about understanding your response to it as it is about the condition itself. example ,its no use popping along to your doctor, getting a script for medication and then letting the meds sit in the medicine cabinet. all in all it is finding what works for you that is key, everyone is different so there is unlikely to be a one size fits all solution. the more you take time to understand your T the better. and please be very wary of adverts that proclaim a "miracle" cure. the only thing those adverts cure( to a greater or lesser degree) is the vendors empty pockets.Oh and do read Micheal's excellent posts on the subject they are based on solid experience.another thing. don't just note the "bad" days, but also note the good days. those experiences are just as helpful as they very likely hold the keys to what is working for you.

 

[Petersi1981]

Clonazepam doesn't work for everyone with tinnitus.
Michael

Benzos are no help for my Tinntius, I only take them to sleep when I'm on the brink of going mad (max 2-3 times a month)...My tinntius is 24/7 super Loud, no fluctuations. As tinnitus levels increase over the years its becoming so hard to Habituate to every new level...This is so scary, if i was 70 it would be one thing but at 36 and all ready experiencing a very severe forum of tinnitus is horror invoking...where does this end???...Does it just increase every few years till I go mad? at least if it just stayed at one level or decreased a bit once in a while to give some relief but its just relentless...

 

[Makrohn]

Benzos are no help for my Tinntius, I only take them to sleep when I'm on the brink of going mad (max 2-3 times a month)...My tinntius is 24/7 super Loud, no fluctuations.

I am sorry to hear about your sufferings my friend.
May I ask what you have tried besides benzos? Like therapy, CBT, TRT, Meditation, Yoga, exercise, diet, sound therapy and so on. Did you try everything with an open mind?

I really wish you well. I have been suffering almost as long as you have and I have also a moderate hearing loss.
My T is very intrusive and especially my right ear with 3-4 sounds that fluctuates.

 

[Michael Leigh]

Benzos are no help for my Tinntius, I only take them to sleep when I'm on the brink of going mad (max 2-3 times a month)...My tinntius is 24/7 super Loud, no fluctuations. As tinnitus levels increase over the years its becoming so hard to Habituate to every new level...This is so scary, if i was 70 it wold be one thing but at 36 and all ready experiencing a very severe forum of tinnitus is horror invoking...where does this end???...Does it just increase every few years till I go mad? at least if it just stayed at one level or decreased a bit once in a while to give some relief but its just relentless...

I hear you @Petersi1981 and sorry to know that you're going through such a difficult time. I am wondering if anything could be making your tinnitus worse without you realizing it. Do you listen to music through headphones?

 

[Kathi]

It depends on what you hope for... I'm at 4 years now and I'm doing okay. I hear my tinnitus only when I'm not involved in something like a conversation or work. It's still as loud but I've habituated to the point that I only get annoyed--not fearful. Read some of my old posts. You will see how afraid I was and how far I've come. The people here were a lifeline to me. Do not be afraid...just keep putting one foot in front of the other...continue with your life. Participate in life --go out--see people. I faked it until I could do it--life.

I'm not counting on a cure--I used to seek info daily about drugs, clinical trials, etc. Then I got caught up living--it's not always easy but it is always doable.

 

[Petersi1981]

I hear you @Petersi1981 and sorry to know that you're going through such a difficult time. I am wondering if anything could be making your tinnitus worse without you realizing it. Do you listen to music through headphones?

I don't use headphones at all, I try to avoid loud music as it does irritate my tinnitus I noticed. My diet is not the best but i don't drink, smoke or do drugs...I went to get my blood test done and Potassium came out a bit high 5.4 (should be below 5.2) so we will see. I have to retake the test as they said it might not be accurate. No I have not tried CBT, TRT Mark. I have habituated to tinntius very well on my own up to this point, so i didn't see the need to spend all that money if its not a cure but a masking technique. But at this point ill give it few more weeks/months, if i cant do it then maybe its time to consider those therapies, i don't know at this point how this will end. You have my deepest sympathies.

 

[Michael Leigh]

Thanks for the information @Petersi1981 I have had TRT twice and found it helpful. It will probably help just to have some counselling with a Hearing Therapist that's trained in the management and treatment of tinnitus. I do hope that you will be able to get some help and find relief.

Wishing you all the best
Michael

 

[Samir]

Q: Is there any real hope?
A: Yes, there is!

Q: Do you believe that you will hear the silence in this life?
A: Yes!

Q: Do you think there are prerequisites for this, is science ready to make discoveries in the direction of tinnitus and sensorineural hearing loss at least in the next 7-10 years? What could it be? Stem cells, gene therapy? Is there any real hope?

A: Yes! A lot of things! Yes, among other things! Yes, there is!

 

[Samir]

Science and scientists are as ready as they will ever be. The real question is, are we ready to do what we can on our part to make a difference?

Science is about uncovering the truth about nature. It's an ongoing process that will stop for nothing. Scientific discoveries are being made as we chat here, and they are being made in many different areas. Every new discovery is an answer to a question, which gives rise to new questions.

No one can with absolute certainty predict what impact single, distinct discoveries will have on our lives. Similarly, no one could have predicted how the discovery of electricity would shape the future of many generations. We are living in the unpredictable future of our predecessors. We are having a conversation, exchanging ideas and offering support on an electronic device which was only made possible by the scientific discoveries of the past.

Therefore, basic scientific research is most important. Therefore, do what you can to support science. Educate people about the importance of science. Inform and educate people about tinnitus! Raise awareness about the risks of tinnitus! Call for more research funding! Send a letter to your representatives in the parliament! Write an article in the local newspaper! Start a blog! Protest against cuts on research funding! Only science can help us better understand this condition. Only once we have a solid understanding of it will we be able to successfully treat it and beat it.

So what is hope? What is real hope? Is there a false hope?

hope
[mass noun] The belief or expectation that something wished for can or will happen.
https://en.wiktionary.org/wiki/hope#Noun

In other words, hope is not something that will materialize unless you force it to. I would go on and say that false hope is when you hope for something but do nothing to make it happen.

 

[fishbone]

Do you believe that you will hear the silence in this life? That you as before, can enjoy silence. Do you think there are prerequisites for this, is science ready to make discoveries in the direction of tinnitus and sensorineural hearing loss at least in the next 7-10 years? What could it be? Stem cells, gene therapy? Is there any real hope?

Your hope comes from inside and how bad you want something in life. That's how i look at things, I don't wait for technology to cure my tinnitus. I cannot keep waiting and waiting and then live the life I want. That's how I look at things, people are different.

 

[Michael Leigh]

Your hope comes from inside and how bad you want something in life. That's how i look at things, I don't wait for technology to cure my tinnitus. I cannot keep waiting and waiting and then live the life I want. That's how I look at things, people are different.

Excellent advice @fishbone if I may say so....

 

[fishbone]

Mindset is so so important in life. Everyone will have hardship, not just us folks with tinnitus. Things happen in life, it's how we react to them, that makes all the difference. I use to have a negative mindset and I simply held myself back from life and what it had to offer me. Tinnitus is horrible, my heart does go out to all who suffer (including myself), but my willpower is much stronger than a damn noise that just wants to annoy me. I do hope a cure does come, but i sure as hell am not going to wait and then live my life.

This is how I live my life and what i have learned in my life. We are all different, but having a good mindset is key.

 

[Greg Sacramento]

Years ago while in college in New Hampshire I did interviews for the college newspaper. I didn't do much writing because I felt that I had a lack of newspaper writing skills. All the presidential candidates came to campus because New Hampshire was the first primary voting state. The editorial board also interviewed some who became president at a later time in history.

After receiving tinnitus I wrote to those people, not only past politicians, but present senators and congress members. Others that I wrote to were health advocates, ones that I met.
I received just one return response from an Utah senator who is now retiring. He wrote about habituation from personnel experiences of friends and citizens in his district. He did comment on the non conforming aspect to those with very severe tinnitus. I can't remember his exact words, but I remember him writing that most with tinnitus don't have severe tinnitus and it's not a life threatening disease.

In the US, there's no federal priority funds for tinnitus research. One of the last approved funding expenditures was from the Department of Defense budget for Navy and Army gunfire and blast exposure treatment.

No federal agencies have any budgeting for tinnitus. Maybe agencies within Europe, but not in the USA.

http://www.apic.org/Resource_/TinyMceFileManager/Advocacy-PDFs/outline_of_govt_health_agencies.pdf

I'm not discouraging anyone from making awareness known, but it's going to take many million if not a billion or so dollars to find a stem cell, gene therapy or drug solution per tinnitus. In the meantime, focus is being made with technology with many temporary treatments available. There's some treatments available now that will help, but it's just finding a treatment that will work for you.

I will try again using a form letter to senators, congress people and health advocates for awareness, but we all need to get involved.

 

[IvanRus]

I would like to tell a little of my story so that you do not feed on false hopes about a cure for tinnitus.

I was a person who loved peace and silence had become my life goal because for more than 20 years I had to deal with external noises to my home or work, which were produced by different activities of people, were noises that started from dawn to night, they only gave me rest to sleep and then they started again the next day.

After years of legal battle it was finally possible to achieve the suspension of the noise but after a few months or days a new source of noise emission started, produced by different people to who had caused the first noise and in a different place, then it was repeated History and after a new battle a little moment of peace was achieved, but also a few days later new people appeared with a new noise emission system that harmed the peace, and this was repeated for more than 20 years.

There were so many times that the story was repeated that this no appear a simply coincidence but rather something orchestrated by life itself, a kind of confirmation that pantheism is true, where a God (or devil) moves us all, because there were no signs that all these people agreed to make my life impossible.

Finally, after that God or life, he sent the infantry, the cavalry, the artillery, the air force for several years in the mentionated noise form, decided as a last resort to avoid the atomic bomb that would end my peace forever, which he achieved with a noise more near my house and more penetrating and inescapable through anti-noise windows, not because of the volume, but because it penetrated through the walls, and although it was not high its persistence was enough to produce a serious transient disorder that triggered a series of additional events They took me to the ear and tinnitus injury.

And before all that, life had taken away something important in my life, for years it gave me false hopes of recovering it, but after so much waiting in the end, the only thing it gave me was the worst of the diseases that exist on this planet, the tinnitus

So believe it, life before providing the cure, prefer and could give us a bad much worse than we already have.

That this also serves as a lesson to understand that habituation does not exist, I never get habituated to the mentioned noises, on the contrary, those caused me great despair even though I knew that they gave some rest periods and that they did not come from my body, but that Paradoxically, they were inevitable because my house or workplace was unmovable at that time, just as the body is immovable with a tinnitus.


_________________________________________________________________________________
The world is not the work of a kindly god, but rather that of a demon, who calls creatures into existence to indulge in their pain.

Arthur Schopenhauer

I did not quite understand your idea. Do you think tinnitus is the worst disease? How do you live now, have you adapted? Have you returned to life, work, sex? Have you tried trt?

 

[Michael Leigh]

I did not quite understand your idea. Do you think tinnitus is the worst disease?

@Equalizer has written a poignant post and out of respect, for the moment at least, I will not add a "funny emote" to his post unlike the many times he has done so to me and other members of this forum. Yes we have noticed.

Some people do not habituate to tinnitus @IvanRus but it is quite untrue to say that "habituation to tinnitus" does not exist and I will explain. Tinnitus is a very common condition that comes in many forms and intensities and no two people experience the same. There are thousands if not millions of people around the world that have tinnitus and go about their lives doing everything that they want to without any problems.

I guarantee, if you ask members of your family or co-workers if they experience tinnitus or ringing in their ears the answer will be: "I get that but just ignore it" "Only hear mine at night but it's no problem" " Mine plays a funny tune, I just ignore it" " I call it my little friend, and hear it occasionally" And so the story goes on. So you see, habituation to tinnitus does exist.

My tinnitus can be variable. It can be: silent, mild, moderate or severe. It no longer reaches extreme severe levels that would last for many days. I have habituated and as I type my tinnitus is quite intrusive but I'm able to dismiss it. Habituation doesn't necessarily mean one won't hear the tinnitus, it means the brain accepts it and learns to ignore it to the point where it doesn't affect a person emotionally.

The problem comes when tinnitus becomes too intense and a person cannot distract themselves from the noise. There are also people that have admitted their tinnitus is mild and still they have problems accepting it and therefore unable to habituate. A person's emotional make up is also very important. If they are a positive thinking person they will usually adapt to tinnitus quicker and be able to get along with their life even if it is intrusive. A negative thinking person can find accepting tinnitus to be more challenging. This does not mean they can't habituate. Seeing a Hearing Therapist or Audiologist who's trained in the treatment and management of tinnitus: counselling for instance can help a tinnitus patient a lot. Ultimately it is up to the individual and what they are prepared to do to help themselves and also how intrusive the tinnitus is to them.

Michael

 

[Michael Leigh]

I do not use trt because it is completely absurd

TRT is not noise against noise. I have had TRT twice and with very good results. Please read my articles on TRT or search the Internet for information about it.

Michael

 

[pathworker2017]

I'm looking into TRT as a possible option as well as, based on what I have read elsewhere( this site for example; http://tinnitus.org/) it is founded on solid principles. another option worth looking at is PTM (Progressive Tinnitus Management), it is more a hybrid treatment /DIY approach

 

[Michael Leigh]

As for what @Michael Leigh says, I remind he, that the only thing that tinnitus sufferers get habituate to is to lie,

If what you believe true then I'm happy to habituate to a lie....