My Turn to Post a Success Story

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.

 

Do you know of other who had success with stem cell therapy ?

 

It has been, and it still is. It's nice to know what a piece of dedicated effort can accomplish.

 

Wow...I have been thinking about the fact that my T improved a few weeks after Trobalt.
Thought it was just a a coincidence , I did not stay with it for 10 weeks though.
Been considering doing another Trobalt trial since i have a few boxes,...I do hate that stuff though.

I timetravel on this shit !

Awesome news , ATEOS !!! Congrats , you deserve it

 

Completely agree with your evaluation of doctors. Unless you broke your ankle, have a blood clot, or have strep throat, doctors really don't do much. They "use" you as an experiment to see what works. Will the patient respond to this? That? Wait and see...

It's like talking to a plant and when it grows or blooms saying to yourself, "see I knew it would work itself out."

P.S. This is coming from a man whose father is a doctor, and up until this year I had almost total faith in doctors.

 

Stem cell therapy tends not to be employed for treating a condition like tinnitus. So when a patient sees an improvement in relation to their tinnitus after a stem cell treatment is it usually as an unintended, but, welcome side-effect of the intervention which would have been carried out for some other primary medical reason. Information in relation to stem cells and tinnitus is therefore scarce, but after having developed contacts over a number of years, I can mention a few other cases:

• A 39-year old female who underwent a stem cell procedure for an eye disease but ended up seeing an improvement with her tinnitus also (as most of the stem cells were given intravenously and therefore act "all over the body").
• A multiple sclerosis patient saw an improvement with her tinnitus after receiving stem cells. I got this information from the CEO of the resource organization that helped me locate the first clinic I got my own treatment at.
• A patient underwent a stem cell procedure to restore cartilage in the knee. His tinnitus also improved some weeks after the intervention.
• I was in touch with Chloe Sohl back in the summer of last year. Her tinnitus improved after receiving stem cells for her severe autoimmune hearing loss.

In addition, there are a few testimonials from this forum.

 

I for one want to thank you for not only this detailed and brilliant post, but all of your contribution you've done over the years to this forum.

 

Our own @FERNANDO GIL also completed stem cells and @whiskeykonteq is currently in Russia completing his own stem cell treatment due to noise induced tinnitus.

 

I think if you have autoimmune damage then what would stop your own immune system to destroy the new stem cell?
If you have vascular compromise what would help regenerate the cell if you no blood flow?
Again etiology of SSHL is not understood, because of spontaneous recovery treatment is difficult to predict outcome.
I have seen many neurological illness recover
Bell palsy is one, complete paralysis and damage to facial nerve recovering with no treatment over time. I have seen people with ocular palsy involving nerve 3,4,6 resolve over time.
I am hoping that time will help us who are suffering , I learned in medical school the the body can heal itself and we were told to do no harm by interfering with nature.

 

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?)

 

so 3 years later are you open to sharing where you went for treatment? I'm not sure I understand why you'd keep this secretive.

 

He has posted where he received treatment numerous times.

Great news ATEOS I always find your posts very informative. I am glad you had some major improvements and I want to thank you for sharing your story with this forum. It has helped me a lot.

 

I couldn't agree with you more! I suggest anybody who wants to learn about this condition or read an amazing journey look at everything ATEOS has written.

 

I haven't been able to find it. He stated he wouldn't be posting it.

 

@attheedgeofscience

Congratulations... It is great to see good results. We will miss your insightful comments.
A few questions: What were the root causes of your two different T cases? Left ear recent (very improved), and right ear from childhood (now gone). It is very interesting that you got great results for two different ethiologies.
Retigabine: The general conclusions from the forum is that it can be helpful mostly for people with recent onset, and success was clearly experienced while taking the drug. You took it after more than two years onset, and with very uneven results (common comment by many users). Then experiencing huge improvement after one month stopping usage (that is first as far as I know). I am sure that you are surprised also, but being a very analytical person, you should have an hypothesis about what has happen. Could you share your opinion? Did Retigabine helped with both T types? Have you had any significant side effects from either the stem cell treatments or Trobalt/Retigabine?

 

Tinnitus since childhood: not sure what caused it (since I have always had it). I suspect a head injury when I was 6 months (car accident). Also, I had chronic ear infections as a toddler (and had ear tubes inserted). That's also a possibility. Lastly, I lacked oxygen for a period of time during delivery. Oxygen deprivation can manifest itself in subtle and not-so-subtle ways. So... have your pick (plenty to choose from).

Tinnitus since 2013: worsening occurred after repeated usage of earplugs (for sleeping). I seemed to have developed an inflammation (not infection). I had a fair bit of irritation and pain in my ear canal at the time I recall.

Well, I was part of the very small group of people who helped compile the data on the informal study conducted here on the forum (so I do have insight into this). The data was handed over to members of TRI. For that data, we observed two overall tendencies: those who were immediate responders (i.e. those who would respond shortly after starting a course of Trobalt and pretty much independent of the dose taken) and those who were dose dependent. We would observe that some members would need to build up a daily intake in excess of 600 mg of Trobalt before symptoms of tinnitus would begin to be affected. Of course, some people saw virtually no improvement. Some of these participants saw no improvement - perhaps - due to their etiology or due to the fact that they did not manage to increase their dosage high enough before quitting treatment. Generally, the sample we operated with was too small and the data collected lacked standardized points of assessment and also there was too much inconsistency with volunteers not seeing the treatment through till the end (i.e. a number of people did just 2-3 weeks reaching no more than, say, 600-900 mg / day). In order to help explain why perhaps some people respond better than others, I have previously mentioned a study involving Trobalt and another Kv-channel opener, Maxipost. The study abstract can be found here:

www.ncbi.nlm.nih.gov/pubmed/25937133

I cannot attach the full-text paper as it is listed behind a paywall. But I do have a copy and as it happens, it is a piece of literature I have commented on elsewhere (I think you might also be able to find a copy of the pre-released text somewhere here on the forum). Regardless of the findings in the journal paper, tinnitus is among academics now well known to be highly heterogeneous and probably each and every individual who suffers from tinnitus is likely to have several contributing pathologies. I will attach another research paper from this year which takes a look at the various layers of dysfunctions in the brain and auditory system which all contribute to tinnitus "in parallel". Curing tinnitus is going to be a mighty challenge; treating it less so, but, due to lack of concrete diagnostic tools, it will - in the future - when treatments become available involve a bit of trial and error for each patient. Or at least, that is my guess.

Due to the heterogeneity of tinnitus, I therefore also suspect that Retigabine is perhaps not so likely to be especially useful in isolation for the treatment of tinnitus. Modulation of Kv-channels will be just one aspect necessary to make an overall difference. Why I saw improvements (post treatment) is something I prefer not to speculate on. Empirical evidence is much better. Especially when the data comes from the "human laboratory". So a trial of Retigabine with well-defined patient etiologies (both objective and subjective i.e. patient history) is the only way to go. Only with standardized lengths of treatment and dosage can results be made meaningful.

I continue to think that stem cells will have a role to play in many areas of medicine (incl. auditory disorders). I am glad to have been part of that first wave of patients who did what few people have done before. Those who know me off the forum will understand why I state that.

 

Well, someone undergoing cartilage repair of, say, the knee would want to have as many of the stem cells as possible directed towards the site of injury. Similarly, a patient with scarring of the liver would want to have as much of quantity of stem cells as possible directed towards the liver. In both cases, local injections would therefore be preferred and/or mixed with IV injections.

 

Bell's Palsy is a condition affecting the peripheral nervous system if my knowledge of biology is correct. To the extent that this is true, that would explain why some patients see a recovery from this condition. To the extent that such patients do not see a recovery from Bell's Palsy, cold laser therapy may hold promise (actually it is proven - see attachment paper). Regardless of the preceding sentence, a condition affecting the peripheral nervous system cannot be compared to damage of the CNS or to damage of biological structures with a refined purpose (e.g. the eye or the inner ear stereocilia). For the CNS specifically, scar tissue formation is a main contributing factor as to why recovery does not occur, say, after a stroke or after an injury to the spinal cord.

I therefore agree with you that certain neurological illnesses may recover on their own, but, that does not mean that other types of neurological conditions will (peripheral vs. CNS vs. damage to refined biological structures). Specifically for the inner ear, there are recovery processes, but, if these do not successfully mitigate an auditory insult within the first few days (certainly within the first few weeks) then you can be pretty sure that the damage is there to stay (more likely than not).

 

Yes I understand it's beneficial to have a higher concentration in the areas of need, but what I didn't understand was whether there was a danger in having the SCs flood your whole body, as in "are there areas of your body where you wouldn't want any repairs done?".

 

Hello @attheedgeofscience
I was very interested to read your story about Retigabine. Having Tinnitus since the end of 2015 - I have sought out as much info as possible on how to live with or reduce it. I have seen a study of Retigabine (Trobalt) and its possible uses to help reduce T. There seems to be a number of unwanted side effects. Did you suffer from them? You probably know that Scifluor (US Pharma) are looking to produce a derivative, adding "Fluoron"? - the clinical research name is SF0034 and they have applied for patents. I believe this will be looked at specifically for Tinnitus use - may be a few years yet before we know if it will be available. Do you know anything more?

I am going to start a course of rTMS in late August - this has a fairly good chance of making a positive difference - its non-invasive, with no side effects. At present, I am sticking with non-drug options - but we'll have to see what happens, can't promise I won't resort to them if the need arises! I agree with your comments on doctors/audiologists/ENT - I have found them less then helpful fir my T - I've had to sort it all out for myself, including having Mindfulness to help me come to terms with it.

I'll keep you posted on progress of my trials.

A

 

Here.

 

The Pittsburgh scientific community has almost a "monopoly" on the development of Kv7.x channel openers. A surprising amount of scientific research in relation to the Kv-channels stems from this small area of the world map alone (i.e. SciFluor Life Sciences, Knopp Biosciences, and a future pharma for RL-81). Much of the research conducted along with the researchers working for the pharma companies involved in this type of research have been educated at the Pittsburgh School of Medicine.

You can find information on all of that here:

• https://www.tinnitustalk.com/thread...reat-epilepsy-and-neurological-disorders.7743
  
• https://www.tinnitustalk.com/thread...ent-kcnq2-3-specific-channel-activators.14531
• https://www.tinnitustalk.com/thread...sage-of-awareness-by-attheedgeofscience.12693
  
• https://www.tinnitustalk.com/threads/knopp-biosciences.9619

There is a bit of information on Retigabine also:

• https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896
  
• https://www.tinnitustalk.com/threads/advocacy-campaign-for-research-on-trobalt-and-tinnitus.11578
  
• https://www.tinnitustalk.com/threads/team-trobalt-update-—-april-9-2015.9064

Both yes and no. At the moment, it would seem that a future deployment of various Kv-channel trials has lost its momentum (certainly in relation to demonstrating efficacy towards tinnitus - I don't think we will see a trial for SF0034 in relation to tinnitus). The pharma companies pursuing this type of research seem not to have delivered on their milestones in a timely manner. That - from a financial investor perspective - is never such a good indication. In this respect, the inner ear otology pharma companies have done a better job and managed to progress their early stage research into something which is more mature. On the other hand, a company like SciFluor may - tomorrow - announce that a clinical trial will take place on a such-and-such a date (you never know). So yes, I do have some more knowledge, but, as always in this line of business, it is more in the form of indications which - when assembled - may help paint an overall picture (as opposed to knowing hard and concrete facts). And, as you can imagine, whatever indications I might have, they are not really suitable for dissemination on a public board.

Sure. In traditional pharmacology, the basic axiom states that you cannot have a front-effect without also having a side-effect. So yes, I did have side-effects: everyone would. But none that were permanent. Two long term studies evaluating patients taking Trobalt over a 10-year period have been released. I do not really recommend Trobalt for off-label purposes. The MoA of Trobalt in relation to tinnitus is known to address early stage modulation of Kv-channels after an auditory insult. Some people are resistant to tinnitus (a relatively new term in scientific literature). Those who are not resistant will develop tinnitus within 4-7 days after sufficient noise exposure (in the animal models employed). It is in this time frame that Trobalt is known to likely have some effect (to counter the hyperactivity that develops). What happens after that is another story. Due to the nature of the research (involving mice), the studies carried out typically involved just very acute tinnitus, meaning: Troblat may have some efficacy in more chronic situations, but, we don't know that (because it wasn't examined).

 

I was treated in Bangkok for my first stem cell treatment. For my second, I was treated in China. Both stem cell treatments used MSCs derived from umbilical cord tissue (as opposed to adipose MSCs). In addition, the Thai clinics use peptide injections to boost the efficacy of the treatment. I prefer the Bangkok bio-technology community over other ones: they are simply more advanced and further ahead.

Various clinics use various protocols in relation to culturing of stem cells in preparation of a treatment e.g. protocols defining how many times the same original stem cell can be used over and over again for culturing (also known as "passages"). Also the source and sub-type of stem cells matter (depending on the type of medical condition treated). I do not wish to get into all of that here. I have already shared mountains of knowledge on that. My profile page is well worth a read if you are interested in a scientific approach to tinnitus (see the information tab on my profile page). All the relevant information has been listed in sections - easy to read and access.

Hope that helps.

 

Diseased tissue releases certain chemicals (chemical signals due to inflammation). Stem cells on their way around the body will detect those chemical signals. If there is no damage, no further action will be taken. Excess unused stem cells return to the bone marrow (eventually).

 

I've read through much of it. Thanks. Glad to see you're feeling better.

 

@attheedgeofscience

First of all, a big congrates for your improvement.

In a second time, thanks for all your publications.

Finally, I agree with you, a lot of doctors are not great (like in all jobs), but patients expected a high level even with GP 'cause white coats are often pretentious, self confident and very well paid for a mild result...


Good luck for the rest of your new life.

 

Thanks. That answers my question.

 

Hey, just wanted to add my congratulations. This is great news and you certainly earned this improvement. Thanks also for all the hugely valuable info you have shared. It made my day popping back in here and reading that you got such a huge reduction.

 

Just stopped in and saw your post @attheedgeofscience --great news and congratulations on your success. While I didn't always understand your posts as I'm not very scientific, I admired your dedication to improving our situation.
Lots of luck

 

I'm astonished and thrilled that you had managed to have your tinnitus reduced to perhaps a benign level. And had your hearing improved too? That's amazing!

I've done a lot of stupid things in my teenage years to where the tinnitus and hearing loss is a huge aggravation, and even hindrance in some cases, to my life. I would love to be able to listen to music again, and be able to listen to podcasts, without this dull and distorted feeling in my ears, so it is great to know that is very well possible. That is, if this kind of treatment can tackle very old injuries, which seems like it can based on what you describe.

I know nothing about biology, or the business of it, but why so much politics in the stemcells (not the ethics, but the research outside of ethics)? Why are there "rogues" trying to scam people?

Can the stem cells do what researchers are trying to do with nt-3, atoh1, myelination, etc?

Thanks.