- Aug 14, 2013
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- Oct 2, 1977 (Age: 39)
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Member, Male, 39, from Denmark
If you have questions for me, then please read my "Information" tab first - it will most likely contain the answer... Aug 7, 2016
- Oct 2, 1977 (Age: 39)
- Tinnitus Since:
Welcome to my profile on TinnitusTalk.
- Cause of Tinnitus:
- Head Injury
If you are reading this, then you - or someone close to you - is probably suffering from tinnitus. You may of course also have come here because you are specifically interested in "my story". Alternatively, you may be looking for specific information that I have provided, but which you cannot find amongst the +2000 posts of mine here on TinnitusTalk. And so in the rest of this information sheet, I will be dividing it into three sections - one for each of the topics above.
Going into the basics of tinnitus would be pointless in the year 2016. The Internet has been around for some 20 years, and pretty much any kind of information on tinnitus can already be found by searching the appropriate key words. In this section, I will therefore be focusing on some of the more uncommon pieces of information on tinnitus.
By far the most prevalent cause of tinnitus is noise exposure - either long term or short term exposure (also known as acoustic trauma from e.g. exposure to a firecracker or a loud 2-hour concert). Tinnitus which develops from an acoustic trauma has a reasonable chance of going away by itself. Most often with this kind of auditory insult, there will be an accompanying degree of temporary hearing loss which is known as a temporary threshold shift - and that is what is felt as "muffled hearing" (something which is commonly experienced after attending a concert). As the hearing loss begins to recover, the associated tinnitus will be begin to decrease in loudness in too. However, from time-to-time, there are cases where the tinnitus does not go away. At least not immediately - and unfortunately, sometimes not at all. So if you have developed tinnitus from short-term noise exposure, when should you be alarmed? In my (non-medical) opinion, tinnitus is a cause for concern if it persists beyond 24 hours. Many people - including doctors and ENTs - take the approach of "waiting it out" to see if the condition improves on its own. Doing so could quite possibly be the biggest mistake you will ever make in your lifetime. During the first 48 hours after onset, there is a window of opportunity where a course of steroids may be effective and reduce the severity of your tinnitus or even eliminate it altogether. My advice therefore is to seek out an ENT immediately at the 24 hour mark (or before). Get a same-day appointment - or if necessary, seek help from the emergency services.
Doctors and ENTs of today tend to assume that (subjective) tinnitus can be diagnosed using an audiogram. It cannot. Audiograms were invented to diagnose hearing loss in the speech frequency range. Not tinnitus. Often patients are told by doctors: "you have normal hearing" or "you don't have hearing loss" and hence implying that the cause of tinnitus must be related to something else. Tinnitus is almost always related to auditory damage - whether visible or not on the audiogram. The reason is that even small dips of 15-20db of hearing loss is significant (even if that kind of hearing loss is "normal for your age"). Additionally, almost all audiograms are evaluated only for the 0-8 kHz range (the so-called speech frequency range). That means hearing loss in the upper frequencies (8-20 kHz) is left undetected.
Lastly, a piece of good common-sense advice: use earplugs...! In the words of Dr. Wilden: "The more you use them, the more you will start to appreciate them."
For more information on audiograms and interpretation of results, see this link:
Tinnitus in children is often described by ENTs as "very rare". Not too much is known about tinnitus and children, but it is probably safe to say that tinnitus in children is more common than we think. Personally, I would neither describe it as "very rare" or "rare", but instead I would perhaps use the term "uncommon".
When it comes to tinnitus, the general public perception is that it is always somehow related to noise exposure. This misunderstanding means that tinnitus in children tends to be an overlooked problem. For this reason, I will list some of the additional possible causes of tinnitus below:
- Ear infections
- High fever at some point in childhood
- Certain childhood diseases
- Congenital hearing loss
- Head injuries
- Ototoxic medication
2. My Own Story
I developed severe tinnitus on April 23rd, 2013. It was a Tuesday. And it is a day that I - in retrospect - will never forget. The exact cause of my tinnitus is still unknown to me, but I will be providing some clues later on. What is known, is that after going through the usual examinations with an ENT, chiropractor, dentist, and neurologist, I was left without a diagnosis (of the cause). Idiopathic cases of tinnitus are not uncommon. But without a diagnosis, it is almost impossible to treat "the disease" - not to mention that even if a diagnosis was given, tinnitus is still largely considered incurable. I therefore quickly realized I had no choice but to become my own doctor and apply unconventional approaches if I wanted to hear silence again. And so my journey into the world of experimental medicine began.
My doctors here in Germany left me without any answers. I therefore - like many others - began to educate myself and search for possible "cures" using the Internet. I knew I had to try something different, something unconventional - if I didn't, I would simply be following the footsteps of the many others before me. The "many others" who had failed, that is...
I came across the topic of LLLT one day while researching tinnitus on the Internet. In this sense, I was fortunate to be living in Germany. In Germany, there is (or rather, was) the clinic of Dr. Wilden. The therapy was not cheap and had a tainted reputation on the Internet. But with no other options available to me, I decided I had nothing to lose. I have described my own experiences extensively on this forum (as well as the experiences and testimonials of many others). See links in the next section if you are interested in this therapy.
Result: Up to 25db reduction of hearing loss (at 8 kHz); before/after audiograms can be found in my introduction (see links in section 3. below).
Stem Cell Therapy
While I did benefit from LLLT in terms of a hearing improvement, the therapy did little for my tinnitus. After two months of therapy, I therefore decided to pursue other options. As mentioned earlier on, I knew tinnitus is considered incurable by the current medical establishment and so I had to look for uncommon therapies which had not been attempted before i.e. clinical trials or experimental therapies - essentially therapies at-the-edge-of-science. One day while doing research on the Internet, I somehow ended up reading about stem cell therapy. I don't remember the exact circumstances, but one way or another, I found a link to a youtube video featuring the unique story of Chloe Sohl who - so far - is the most successful stem cell recipient for the experimental treatment of hearing loss (presumably because her condition was triggered by an autoimmune disorder). She had regained most of her hearing from the treatment. But there was no mention of tinnitus in the video. I assumed that she probably had suffered from tinnitus as well (after losing almost all of her hearing). I decided to look into this a little further and I was fortunate to discover that her tinnitus improvement was pretty much equal to her hearing loss gain (i.e. approximately 90% improved some 2-3 months post stem cell injections). This was my most important lead and within a couple of weeks I had found and corresponded with three different stem cell clinics who would be willing to offer me a treatment similar to that of Chloe Sohl. I ended up doing two separate stem cell treatments roughly 5 months apart. I have shared my story for both trips (as a journal on this site) and also my reflections on stem cell therapy in general.
Result: Approximately 50% improvement in tinnitus loudness (both ears).
Potassium Channel Modulators (Flupirtine)
Another treatment option I looked into was the off-label usage of Flupirtine (a muscle relaxant) for the treatment of tinnitus. This idea arose from the increasing interest I developed in the phase II clinical trial of AUT00063 (which uses a first-in-class potassium modulator) as well as the very interesting experience shared by another member of TT who had seen dramatic improvements using another potassium modulator similar to Flupirtine.
Result: I only experienced very minor inconclusive improvements - most likely because I did not carry on with the treatment for a long enough period of time. I decided to discontinue my treatment for other reasons. Update (24/FEB/2015): slight to moderate improvements experienced after 4th round of treatment.
Potassium Channel Modulators (Trobalt)
Towards the end of 2015, I started a course of Trobalt.
Result: While taking the drug, I would only experience sporadic and temporary improvements. I maintained the maximum dosage of 1200 mg/day for about 8 weeks. Total treatment was approximately 12 weeks. Since cessation of treatment, I have gradually seen a permanent improvement.
Being a Dane living in Germany, I was not allowed to participate in the clinical trial of AM101 (sponsored by Auris Medical) even though Germany is one of the "host" countries for the trial. However, I managed to track down two doctors involved with the clinical trial (one in Germany and one in the US), and who would be willing to offer the exact same treatment as in the clinical trial - provided Auris Medical would be willing to release the drug for off-clinical trial purposes. This request was unfortunately denied. Following that, I went through a lot of "red tape" to get the decision overturned. That failed too, however.
Result: None (treatment was not carried out); but I have gained a lot of valuable insight into how clinical trials work. I also remain in contact with the highly competent ENT-surgeons at the Acquaklinik in Leipzig, Germany. I will be seeing one of the doctors there for a possible consideration of trying out a procedure similar to the one carried out in the OTO-311 clinical trial.
In November 2014, I went to see Prof. Jeanmonod in Switzerland for a consultation which included a high-resolution EEG scan that allows hyperactivity and power-spectrums to be accurately evaluated. These scans seek to specifically evaluate patients for a diagnosis of thalamocortical dysrhythmia. HIFU stands for high intensity focused ultrasound. The surgery is non-invasive (requires no drilling into the skull) and is the only kind in the world.
Results: None (I am not a candidate for surgery). An account of my full day consultation and evaluation (incl. high-resolution EEG-scan) can be found via the links in section 3, below.
As a final note in this section, I will provide a link to a post in which I offer some clues as to the possible causes behind my recent and life-long tinnitus:
3. Important Links
Stem Cells & Clinical Trial Information
SciFluor Life Sciences LLC
Future Kv-channel opener (RL-81):
4. Clinical Trials and Tinnitus
I have added an extra section to this information page - an epilogue with a few brief reflections that I consider relevant. Tinnitus is a symptom that may stem from several different disorders. This multi-factorial etiology is what undoubtedly complicates research and clinical trials for the treatment of tinnitus. Indeed, sub-types of tinnitus and the ability to reliably "capture" the relevant patient profiles is what makes tinnitus research hard and is also what requires clinical trials to intelligently come up with the right inclusion criteria as well as enrollment of high number of patients.
The biological processes that occur after an auditory insult - the acute phase - are now believed to be understood. At the time of this writing (24/JAN/2016), I believe that the AM-101 trial will prove to be successful: after a doubtful phase-II trial, I believe we will now see a successful phase-III trial (and hence the first ever medication for tinnitus to hit the market - perhaps in 2017). The rationale for my reasoning has to do with several factors - most importantly that the number of participants is much greater in the phase-III trial and that we have still not seen a discontinuation of the trial; I believe it would be unusual to discontinue a trial so late after initiation.
Whatever happens, this is one of the most exciting times for the field of otology research pertaining to inner ear disorders.
5. My Success Story
After three exhausting years of dealing with tinnitus as well as the "fallout" that sometimes results from developing severe tinnitus, I have managed to turn my situation around. My initial tinnitus which I would rate at about 9/10 (in 2013) is now at a stable level 2/10. I have included an account of that here:
Good luck and best wishes to everyone.
"Tinnitus is a curse straight from Hell that somehow ended up in the realm of the living."
"Heaven has no favourites."
--Erich Maria Remarque