My Turn to Post a Success Story

[Hopeful1]

The OP's Tinnitus is not noise induced....Noise induced T(NIT) is a tough nut to crack....not a single case of NIT has responded to any kind of treatment.

Sorry to dash your hopes.

 

[Vinnitus]

The OP's Tinnitus is not noise induced....Noise induced T(NIT) is a tough nut to crack....not a single case of NIT has responded to any kind of treatment.

Sorry to dash your hopes.

I disagree. I personally don't see why a noise-induced etiology would be any more difficult to treat than any other etiology with origins in the inner ear. The type of damage is pretty much the same in all cases; loss of synapses/SGNs and/or loss of hair cells.

Of course, one might argue that the brain is involved in sustaining Tinnitus; but this would probably not be any different for other etiologies. It still remains to be seen if proper inner-ear restoration will result in Tinnitus remission, or that it's still sustained in the brain and the hearing loss was merely a trigger.

The problem in these cases is a damaged inner-ear, resulting in malformed input or loss of input to the brain. Stem cells and gene therapy have the potential to regenerate new hair cells or stimulate nerve growth (NT3), resulting in restoration of input. This would not be any different for a damaged inner ear by ototoxicity, noise trauma, viral infection, antibiotic use or anything else.

 

[Stephen1144]

Seems like good news and it makes sense. I just hope the stem cells are a permanent solution. I would hate to spend all that time and money, and then the tinnitus just comes roaring back some months later.

Thank you for the informative post. Good luck!

 

[Hopeful1]

I personally don't see why a noise-induced etiology would be any more difficult to treat than any other etiology with origins in the inner ear

4 people agree with your post and 2 people like it. We all like to be optimistic!!!...

I know this because i researched more than an average T sufferer.....it is well know with reseachers that noise induced T is harder to fix ..... as not only the synapses are displaced there is also some damage to the hair cell itself even though it still detect sound....go through end of the video where reseachers answers questions at around 1 hour into the video i think
..where he mentions this fact....



Also in the forum i see success stories mostly from T suffers from causes other than NIHL ... though there are a couple of people whose NIT went away .... their relative number is low.....and not a single case of NIT(noise induced T) in this forum that is fixed by stemcell. @whiskeykonteq still did not see any significant improvement so far.

Hopefully that will change.....maybe will know once @bill 112 takes the plunge into stemcell treatment.

 

[Tom Cnyc]

There are plenty of noise successes.

I know 2 personally. My T has dropped 75-80% in 7.5 months.

 

[lapidus]

There are plenty of noise successes.

I know 2 personally. My T has dropped 75-80% in 7.5 months.

Might be wrong, but I think @Hopeful1 is only talking about stem cell therapy successes.

 

[Tom Cnyc]

Might be wrong, but I think @Hopeful1 is only talking about stem cell therapy successes.

We don't have enough data to say it works for anyone, including ATEOS as he threw the kitchen sink at his T

 

[lapidus]

We don't have enough data to say it works for anyone, including ATEOS as he threw the kitchen sink at his T

Yes, I agree. Only three people on this site have underwent stem cell therapy.

 

[Hopeful1]

I think @Hopeful1 is only talking about stem cell therapy successes.

Yes, i was refering to stemcell success....but i also think noise damage is more extensive.....fewer people have spontaneous recovery from NIT when compared to say T from infections ..... and people whose T from medications are less likely to have hyperacusis than when compared noise induced Tinnitus. People with Hyperacusis have more severe form of T than the people with only T.

 

[attheedgeofscience]

It's been about a year since I posted my success story. So it's time for an update (for those who are interested).

So what has happened in the past year?

1. My tinnitus has remained low and even continued to improve slightly - it's now down to about 1/10 (0 = no tinnitus, 10 = severe tinnitus) and stable. I don't get reactive tinnitus or spikes. It's totally easy going for me. And hence no issues with concentration, falling asleep, staying asleep, and so forth.
2. Right around the time I posted my success story (in 2016), I had been in early stage collaborative efforts with TRI regarding the dissemination of articles that were to be published as part of the Frontiers research topic on tinnitus heterogeneity. As part of the exercise, I formed a small group of volunteers who support the advocacy efforts in this regard (incl. basic financing for sponsored updates). We are now at the very end of our year-long campaign and so far our material has received more than 5,000 Facebook ratings and nearly 500 Facebook re-shares; one Facebook update we did got 3,000 ratings by itself. The research topic is well in the lead and a strong contender to get on the winners shortlist. Regardless, it looks as if the numbers by themselves are beginning to make an impact in "other ways". And due to the huge number of views, search items like "frontiers tinnitus" and "tinnitus heterogeneity" have long since been indexed via search engines. The topic should break the magic barrier of one million views later this year.
3. I continue to follow developments from the leading otology pharma companies - the ones that are publicly traded, that is (i.e. Auris Medical, Otonomy and Sensorion). But the path to market launch is not always easy when it comes to tinnitus related drugs and interventions. At the moment, I do not believe there is any mass market drug/intervention in pipeline progress with the aim of treating chronic tinnitus (AM-102, specifically, seems to be ruled out it would seem; search the dedicated thread on that if you are interested).
4. In March/April this year, I was also asked by a group of researchers to get much more deeply involved in launching a tinnitus related initiative. But I don't want to comment on the specifics of that in a public setting. Perhaps next year...

Anyway... that's what has happened in the past year.

 

[teacher34]

With more than 2,000 posts on TinnitusTalk, the average visitor will eventually have stumbled upon one of my posts here on the forum. I shall therefore not spend too much time on my background. But briefly: back in 2013 (April), I developed severe, unrelenting, and multi-tonal tinnitus. Within pretty much 24 hours, I knew I was doomed. Like most people - probably - I went to see an ENT early on (day-4 after onset in my case). I was given steroids intravenously (125 mg) and then a take-with-me-home taper. Did nothing. Subsequent audiometric evaluations showed normal hearing in the 0-8 kHz range. Like most people, I assumed the ENT evaluation was correct and that the problem with my tinnitus must be due to something else (and certainly not related to the cochlea). And hence began my three year journey into the world of experimental medicine, clinical trials, liaison with researchers & pharma companies, advocacy, and, a renewed outlook on the world, in general, and on medicine and physicians, in particular.

So where exactly is the "success part" in this success story? Well, back in the summer of 2013, I underwent my first stem cell treatment. Later on in 2013, I went through yet another one. Probably - for a number of reasons - my most important, correct, and valuable decision ever in my life. The two stem cell treatments did not cure my tinnitus entirely, but, they brought it down to a manageable level where I could once again sleep without the use of sleep aids or masking devices (which in any event irritated my hearing even at very low volume). Having had my tinnitus reduced from a level 8-9/10 down to a level 4/10 was indeed a huge relief. But the remaining level 4 was still the equivalent of a tinnitus intrusion in the lower part of the "moderate spectrum". I was therefore not completely satisfied. The remainder of my treatment story can be read via the information tab on my profile page. But a brief mention in relation to the final part which I have not covered so well (anywhere on TinnitusTalk): Back in late 2015 and for a number of weeks leading into 2016, I did a course of Trobalt (Retigabine). I did a fast taper where I tapered up to 1200 mg in about 10 days (If I recall correctly). The normal protocol advised by GSK is 150 mg per week - but I could be wrong, so check the information. Anyway, I did a fast (and not recommended) taper and had some occasional days where my tinnitus was definitely lower for the entire day. But the progress was not linear. I carried on for some 10 weeks in total (give or take) - I did not keep a diary. The treatment with Trobalt did immediately result in any permanent and lasting improvement as I was approaching the end of my course. Indeed, this outcome was also as predicted by the diagnosis that resulted from the high frequency EEG scan performed by the HIFU clinic in Switzerland where my abnormal hyperactivity - likely to be the cause of my tinnitus - can be seen in 3D and is located in the right orbito frontal area, inside the paralimbic/associative system of the brain (see HIFU thread if you are interested). However.......... about some 3-4 weeks after cessation of the treatment with Trobalt, I began to see further slight and gradual improvements. Now, at this point, my tinnitus has settled down to a 2/10. As I type these lines on my computer in a quiet room, I can very faintly hear my tinnitus in my left ear/side. My right sided tinnitus that I have had since childhood is completely gone. Specifically, I had also had some degree of "head noise" with a reactive component attached to it and very noticeable when driving a car as it would "compete" with the increasing noise levels at higher speeds; I used to live in Germany where road speeds are unrestricted, and, even at speeds well above 200 kph, I could very distinctly hear my reactive head noise at times i.e. on certain days (it would vary somewhat in intensity depending on the day). Trobalt did most definitely have an effect on this type of head-noise tinnitus. Now, during the day when I am at work, I do not notice or hear my tinnitus at all. I am 100% productive and focused at work. My tinnitus is no longer an intrusive EEEEEEEEEEEE-whine. It is not even an eeee-sound any longer. Just a faint frequency-less noise which mostly feels as if it is a noise that I can hear from a distance (and neither from my ear, nor my head - although it is coming from the left side). I therefore also have no problems going to sleep, or, remaining at sleep.

A Few Reflections:

• Topic: poor decision making skills, flawed arguments, and lack of self-leadership. If I spend too much time on this entire post, it will end up being miles long. But to add a bit of background to this matter, I will mention that - in addition to suffering from tinnitus - I have also suffered from relapsing uveitis since 2011 (now known to be the result of a Shingles infection I had with outbreak on the lower torso; so non-ocular in other words). This condition is 100% cured as a consequence of the stem cell treatments I received: besides being regenerative, Mesenchymal stem cells (or MSCs) are also immunomodulatory. Autoimmune uveitis is not too common in the overall population, but, the disease progression and lack of adequate treatments mean that the prognosis is not exactly great: the patient will eventually acquire impaired sight from either the disease itself or from the overuse of steroids used to manage the condition ("Cholera or The Plague" - you choose). During 2016, we have also seen successful outcomes in clinical trials where stem cells have been used to treat chronic stroke symptoms and moderate-to-severe eczema (both medical conditions where there are no real treatment alternatives at the present time). Now, these stem cell trials are not as advanced as you might think: they could have been carried out five or even 10 years ago (in some cases). Certainly the eczema trial and also a trial related to autoimmune uveitis in rats rely on bio-technology that is pretty standard. Interestingly and for comparison purposes, I recently checked the total cost so far spent on the International Space Station (ISS): at this point, the total cost spent on building it and keeping it operational is at 150 billion dollars. That's 150 billion dollars - with a "b" (not million). I am all for physics, but the ISS is not really much more than a piece of space junk orbiting the Earth and with a rotating crew of astronauts. Of course with a price tag of 150 billion dollars, it is not just a piece of space junk: it is A PRETTY EXPENSIVE PIECE OF SPACE JUNK.... And while some half-brain monkies with less leadership skills than a 2-year old toddler have decided to spend 150 billion dollars on a piece of debris circulating the Earth, we still have terrible and non-researched diseases affecting people all over the world. My faith in humanity is not restored.
• Topic: physicians and medicine. Like most people, I went to the "good ol' doctor" when I developed tinnitus (and also my uveitis prior to that). Aaaaaannd... like most people, I guess I assumed - incorrectly - that doctors were kind of the best resource available (should I happen to fall ill). Turns out I was wrong about that (but right about everything else that was to follow). So, hereby a few examples of why doctors are not (always) your best resource. Back in 2014, I went to see an ENT to have an evaluation of my airways - and - to possibly inquire about enrollment in the AM-101 trial and/or seek to obtain the AM-101 compound prior to market release (directly from Auris Medical). The ENT - a nice "30-something" female doctor - listened attentively to everything I had to say and ask. When the topic turned to AM-101, I could tell she had no idea what that was, and so, I mentioned that the active component was Esketamine. I saw her face light up: "Ahhhh...!" - and then she continued: "That must be a new development?!?". Me: "Ummmm.... Not really. Auris Medical was founded in 2003 - about 10 years ago" (silence). But it didn't stop there: it turned out that her day-to-day colleague - whom I saw the next day - was part of the clinical trial of AM-101 in Germany. Speechless. And when I developed Shingles and had my first uveitis outbreak two months after that (in 2011), I was forced to see an eye doctor urgently. I mentioned my episode of Shingles (which was still visible at that point). That doctor and the doctor I saw the day after (along with all the other doctors I went to see when I had subsequent outbreaks) all confirmed to me that there could be no correlation between Shingles and relapsing uveitis. Turns out they were wrong: it was proven in 2012 in a medical study that there is a correlation and that doctors should automatically screen patients for uveitis for a full year after an outbreak of Shingles. Of course, in 2011, that information wasn't available to them, but, don't tell me that a person - a doctor - who sees 1500 patients a year wouldn't (or rather shouldn't) be able to ascertain that very fact just by paying attention to the patients that walks into his or her office. I mean: by the 10th time a patient shows up with uveitis and says hap-hazardly: "...by the way doctor, I also had a Shingles outbreak not long ago" then even the least analytical person (doctor) should be thinking: "Hmmmm.... I wonder if there is a correlation". But no. And of course, considering treatment options such as stem cells (which have no side effects) to treat a condition that currently can only be managed inadequately with drugs that have many side-effects - that is a decision we better postpone for as long as possible, right? Why do the right thing, when you can continue to uphold the status quo just fine and do the wrong thing? That's much better. Let us not have any progress.

Good luck to all. I hope my story has been useful.

This is very useful information. Could you possibly share the details of your Retigabine taper, both up and down?

 

[attheedgeofscience]

This is very useful information. Could you possibly share the details of your Retigabine taper, both up and down?

I wouldn't read too much into what I did (or didn't do). I just shared my story - that's all. Listed below are two of the papers that helped shape my thinking, however:

• www.ncbi.nlm.nih.gov/pubmed/24681057
  
• www.ncbi.nlm.nih.gov/pubmed/23716673

If you can't access the articles, let me know. Hope that helps.

 

[Paulmanlike]

Jacob, if there ever was a guy who refused to believe there "there is nothing that can be done" and went out and achieved success then this is you. You should be in newspapers all over the world. Remarkable achievement. Well done.

Shame about the am-102 and I'm not hanging hope for the oto-311 for chronic tinnitus, however what are your views on acoustic cr neuromodulation for noise induced tinnitus?

 

[attheedgeofscience]

Shame about the am-102 and I'm not hanging hope for the oto-311 for chronic tinnitus, however what are your views on acoustic cr neuromodulation for noise induced tinnitus?

A group of Danish clinicians did a review on existing literature (as part of the articles that make up the Frontiers Research Topic on tinnitus heterogeneity):

http://journal.frontiersin.org/article/10.3389/fneur.2017.00036/full

The review indicates that there may be positive effects from the therapy, but that there is not sufficient evidence to (yet) implement the ACRN in practice.

Jacob, if there ever was a guy who refused to believe there "there is nothing that can be done" and went out and achieved success then this is you. You should be in newspapers all over the world. Remarkable achievement. Well done.

Many thanks. However, one of the lessons I have learnt is that for some topics, advocacy is best done behind-the-scenes (as opposed to "in the open"). Tinnitus is definitely one such topic. So it is a matter of influencing what can be influenced while the opportunity presents itself.

 

[AmericanJosh]

Is there a reason for not wanting stem cells to act "all over the body"? (put it differently: why would we ever want to do it any other way?)

Unfortunately, systematic stem cells injections have no effect. Most stem cell treatments are amniotic fluid which carries no stem cells. Unless you go to an MD who takes cells from you and then using fluoroscopy to inject them into targeted locations, you've been duped.

https://sciencebasedmedicine.org/tag/stem-cells/

 

[Apolonia]

With more than 2,000 posts on TinnitusTalk, the average visitor will eventually have stumbled upon one of my posts here on the forum. I shall therefore not spend too much time on my background. But briefly: back in 2013 (April), I developed severe, unrelenting, and multi-tonal tinnitus. Within pretty much 24 hours, I knew I was doomed. Like most people - probably - I went to see an ENT early on (day-4 after onset in my case). I was given steroids intravenously (125 mg) and then a take-with-me-home taper. Did nothing. Subsequent audiometric evaluations showed normal hearing in the 0-8 kHz range. Like most people, I assumed the ENT evaluation was correct and that the problem with my tinnitus must be due to something else (and certainly not related to the cochlea). And hence began my three year journey into the world of experimental medicine, clinical trials, liaison with researchers & pharma companies, advocacy, and, a renewed outlook on the world, in general, and on medicine and physicians, in particular.

So where exactly is the "success part" in this success story? Well, back in the summer of 2013, I underwent my first stem cell treatment. Later on in 2013, I went through yet another one. Probably - for a number of reasons - my most important, correct, and valuable decision ever in my life. The two stem cell treatments did not cure my tinnitus entirely, but, they brought it down to a manageable level where I could once again sleep without the use of sleep aids or masking devices (which in any event irritated my hearing even at very low volume). Having had my tinnitus reduced from a level 8-9/10 down to a level 4/10 was indeed a huge relief. But the remaining level 4 was still the equivalent of a tinnitus intrusion in the lower part of the "moderate spectrum". I was therefore not completely satisfied. The remainder of my treatment story can be read via the information tab on my profile page. But a brief mention in relation to the final part which I have not covered so well (anywhere on TinnitusTalk): Back in late 2015 and for a number of weeks leading into 2016, I did a course of Trobalt (Retigabine). I did a fast taper where I tapered up to 1200 mg in about 10 days (If I recall correctly). The normal protocol advised by GSK is 150 mg per week - but I could be wrong, so check the information. Anyway, I did a fast (and not recommended) taper and had some occasional days where my tinnitus was definitely lower for the entire day. But the progress was not linear. I carried on for some 10 weeks in total (give or take) - I did not keep a diary. The treatment with Trobalt did immediately result in any permanent and lasting improvement as I was approaching the end of my course. Indeed, this outcome was also as predicted by the diagnosis that resulted from the high frequency EEG scan performed by the HIFU clinic in Switzerland where my abnormal hyperactivity - likely to be the cause of my tinnitus - can be seen in 3D and is located in the right orbito frontal area, inside the paralimbic/associative system of the brain (see HIFU thread if you are interested). However.......... about some 3-4 weeks after cessation of the treatment with Trobalt, I began to see further slight and gradual improvements. Now, at this point, my tinnitus has settled down to a 2/10. As I type these lines on my computer in a quiet room, I can very faintly hear my tinnitus in my left ear/side. My right sided tinnitus that I have had since childhood is completely gone. Specifically, I had also had some degree of "head noise" with a reactive component attached to it and very noticeable when driving a car as it would "compete" with the increasing noise levels at higher speeds; I used to live in Germany where road speeds are unrestricted, and, even at speeds well above 200 kph, I could very distinctly hear my reactive head noise at times i.e. on certain days (it would vary somewhat in intensity depending on the day). Trobalt did most definitely have an effect on this type of head-noise tinnitus. Now, during the day when I am at work, I do not notice or hear my tinnitus at all. I am 100% productive and focused at work. My tinnitus is no longer an intrusive EEEEEEEEEEEE-whine. It is not even an eeee-sound any longer. Just a faint frequency-less noise which mostly feels as if it is a noise that I can hear from a distance (and neither from my ear, nor my head - although it is coming from the left side). I therefore also have no problems going to sleep, or, remaining at sleep.

A Few Reflections:

• Topic: poor decision making skills, flawed arguments, and lack of self-leadership. If I spend too much time on this entire post, it will end up being miles long. But to add a bit of background to this matter, I will mention that - in addition to suffering from tinnitus - I have also suffered from relapsing uveitis since 2011 (now known to be the result of a Shingles infection I had with outbreak on the lower torso; so non-ocular in other words). This condition is 100% cured as a consequence of the stem cell treatments I received: besides being regenerative, Mesenchymal stem cells (or MSCs) are also immunomodulatory. Autoimmune uveitis is not too common in the overall population, but, the disease progression and lack of adequate treatments mean that the prognosis is not exactly great: the patient will eventually acquire impaired sight from either the disease itself or from the overuse of steroids used to manage the condition ("Cholera or The Plague" - you choose). During 2016, we have also seen successful outcomes in clinical trials where stem cells have been used to treat chronic stroke symptoms and moderate-to-severe eczema (both medical conditions where there are no real treatment alternatives at the present time). Now, these stem cell trials are not as advanced as you might think: they could have been carried out five or even 10 years ago (in some cases). Certainly the eczema trial and also a trial related to autoimmune uveitis in rats rely on bio-technology that is pretty standard. Interestingly and for comparison purposes, I recently checked the total cost so far spent on the International Space Station (ISS): at this point, the total cost spent on building it and keeping it operational is at 150 billion dollars. That's 150 billion dollars - with a "b" (not million). I am all for physics, but the ISS is not really much more than a piece of space junk orbiting the Earth and with a rotating crew of astronauts. Of course with a price tag of 150 billion dollars, it is not just a piece of space junk: it is A PRETTY EXPENSIVE PIECE OF SPACE JUNK.... And while some half-brain monkies with less leadership skills than a 2-year old toddler have decided to spend 150 billion dollars on a piece of debris circulating the Earth, we still have terrible and non-researched diseases affecting people all over the world. My faith in humanity is not restored.
• Topic: physicians and medicine. Like most people, I went to the "good ol' doctor" when I developed tinnitus (and also my uveitis prior to that). Aaaaaannd... like most people, I guess I assumed - incorrectly - that doctors were kind of the best resource available (should I happen to fall ill). Turns out I was wrong about that (but right about everything else that was to follow). So, hereby a few examples of why doctors are not (always) your best resource. Back in 2014, I went to see an ENT to have an evaluation of my airways - and - to possibly inquire about enrollment in the AM-101 trial and/or seek to obtain the AM-101 compound prior to market release (directly from Auris Medical). The ENT - a nice "30-something" female doctor - listened attentively to everything I had to say and ask. When the topic turned to AM-101, I could tell she had no idea what that was, and so, I mentioned that the active component was Esketamine. I saw her face light up: "Ahhhh...!" - and then she continued: "That must be a new development?!?". Me: "Ummmm.... Not really. Auris Medical was founded in 2003 - about 10 years ago" (silence). But it didn't stop there: it turned out that her day-to-day colleague - whom I saw the next day - was part of the clinical trial of AM-101 in Germany. Speechless. And when I developed Shingles and had my first uveitis outbreak two months after that (in 2011), I was forced to see an eye doctor urgently. I mentioned my episode of Shingles (which was still visible at that point). That doctor and the doctor I saw the day after (along with all the other doctors I went to see when I had subsequent outbreaks) all confirmed to me that there could be no correlation between Shingles and relapsing uveitis. Turns out they were wrong: it was proven in 2012 in a medical study that there is a correlation and that doctors should automatically screen patients for uveitis for a full year after an outbreak of Shingles. Of course, in 2011, that information wasn't available to them, but, don't tell me that a person - a doctor - who sees 1500 patients a year wouldn't (or rather shouldn't) be able to ascertain that very fact just by paying attention to the patients that walks into his or her office. I mean: by the 10th time a patient shows up with uveitis and says hap-hazardly: "...by the way doctor, I also had a Shingles outbreak not long ago" then even the least analytical person (doctor) should be thinking: "Hmmmm.... I wonder if there is a correlation". But no. And of course, considering treatment options such as stem cells (which have no side effects) to treat a condition that currently can only be managed inadequately with drugs that have many side-effects - that is a decision we better postpone for as long as possible, right? Why do the right thing, when you can continue to uphold the status quo just fine and do the wrong thing? That's much better. Let us not have any progress.

Good luck to all. I hope my story has been useful.

Money is the crucial part here. Also, that Trobalt doesn't exist anymore.

 

[guybrush333]

Money is the crucial part here. Also, that Trobalt doesn't exist anymore.

Is there an upcomming alternative to trobalt?

 

[Autumnly]

Is there an upcomming alternative to trobalt?

Xen-1101 by Xenon Pharma. The thread can be found here. They're already through phase 1 and phase 2 is supposed to begin by the end of the year. And maybe also Xen-496 but I'm not so sure about that one... just heard about it today.