Member- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
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:
Good luck to all. I hope my story has been useful.
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.
