Presentation, Research, and...

This is my story. And sorry for my english.
I'm Kyxwz from italy, 26 years old.

Since February 17 I suffer from tinnitus, after a concert (acoustic trauma). A hissing sound (now seems a sizzling sound) but most of the time it is like live around an electromagnetic wave with (just in silence, least that!) a little pure tone (tiiiii) with a low electric buzz. But my problem is (obviously) this wave that i can hear into my head in a lot of situation outside, 24h (15/20/25 decibel? I don't know) and in silence makes me feel in a parallel world. Or suicidal.

For a month, I went into a depression. Think about suicide was the only thing that gave me relief but during this period I read plus 150 studies completely and some others partially (174 in total), I talked to many people and read more than 300 posts (on Facebook and on forums, for example tinnitus talk) and pathogenesis of many stories, but there is a lot confusion and lack of clarity. I wrote to Susan Shore, to dr. Rauschecker, to dr. Tzounopoulos, to Bettina Stubinski (aural team, of AM101) and the Mulders researcher. So I tried to get an idea about the genesis of tinnitus putting together the data. What I understood is that there could be different causes, but the effect is the same for everyone: an ''alarm signal'' that remains active. But why do many people have different signs and sounds at different intensities (I read pretty much everything from those who have a whistle, to those who train, who buzzing, rustling/hiss like me, or whatever)? May it be similar to when the clutch of a car is triggered and doesn't stop? Shouldn't we all hear the same sound? I know it is a difficult problem and I'm certainly not a scientist.
No doctor can tell me why this happens. If it is caused by a coclear damage with a certain signal depending on the lost frequency, for a nerve damage, brain damage or three different damages, or predisposition (a lot of people (like me) also suffering from anxiety before T... but I say: why?
I study philosophy. Philosophy can't help me in this difficult moment but, thanks to philosophy, I go on asking myself some questions (without answer), it seems legit, doesn't it? Why does this happen?
Personally, I have a hearing loss of 35db at 8000Hz due to an acoustic trauma and I struggle to hear even the 7000 until 12000Hz with my left hear. Tinnitus really bothers me. If I move my neck to the right or to the left, the sound becomes more high and it happens the same if I clench their teeth. The review of SUSAN SHORE tell that this is normal for a lot of us. Everything is connected.
I tried corticosteroids (after acoustic trauma), hyperbaric room for 8 days (!!), Citicoline, tricortin, acetylcarnitine, Bromazepam, Clonazepam, duloxetine (ssri), nimodipine with ginko biloba supplements or vitamins, but nothing worked.
From my latest research, these are medications that can be effective (I found online testimonials) but do not work for everyone and sometimes worsen the situation:

-Lyrica (Pregabalin)

-Lasix (Furosemide).
Dr. Helmy Mulders wrote me "However, given That your tinnitus is of recent onset, I will mention That our experimental results and Those of others predict That treatments to temporarily reduce the nerve activity in the inner ear might reduce severity and possibly the progression of tinnitus in cases such as yours. Interestingly, treatments using Relatively low doses of the diuretic drug furosemide were shown 15 years ago to reduce and even eliminate tinnitus in about 50% of sufferers. For information on this, see the US patent description taken out by Dr Paul Guth. The details of the treatment are to be found at the website Following http://www.freepatentsonline.com/4954486.html;

Another study using furosemide is from Cesarani et al., Int. Tinnitus Journal in 2002 and Their data suggest a possible time-window up to 2 years. It so happens That One effect of furosemide is to temporarily suppress nerve activity in the inner ear and Therefore we think this is the explanation for the effect on tinnitus. Now, I would suggest NOT That You immediately go and get hold of some furosemide and treat yourself. This is a potent drug with significant possible dangerous side effects and it should be administered with proper supervision, a full medical examination, and fully informed consent on your part."


-Linopiridine (not on the market and I did not find much about it)

-Transcranial magnetic stimulation (used for depression, seems to be studied by Dr. Rauschecker)

-Betahistine (in some people with Meniere's syndrome seems to weaken tinnitus, but because only some?)

-Acamprosate (one study found positive results, another double-blind study appears to have found no effect)

-Clonazepam (GABA modulator? Now do not work for me on Tinnitus -5 drops in the morning, 5 in afternoon and 5 in the evening)

-Trileptal (Oxcarbazepine)

And just another list that you probably know: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136369/

RETIGABINE (Trobalt) is just my last hope. But if retigabine works i don't want take it always. My target discover something that work for me so I could use it during the holidays, to live an interval of silent life…

Before I surrender and wait for a remedy, I asked the chief of Neurology of my city for help (Prof. Paolo Nichelli), in order to discover if there’s something that can give me temporary relief, considering risks and benefits with him. I'll do some test.

Meanwhile, speaking with many people affected by tinnitus, I did a little experiment that I’d like to share with you:

Instance 1: F. P. 23 years old, left tinnitus (light annoyance), normal audiometry. I asked her to do a test through pure tones: she has a lack between 10.000hz and 12.000 Hz in the left ear. Therefore, is there a possible damage over the threshold of 8000 Hz. Try to find it if your audio test tell you the opposite.

Instance 2: F. V., 36 years old, bilateral tinnitus (medium annoyance), normal audiometry. She said she got tinnitus in Sahara desert. She said there was so much silence, that it proved to be deafening, and, a few moments later, the tinnitus appeared. Since that moment, it remained, and now she is 42. A “deafening” silence that that makes tinnitus conscious? Isn’t it strange? I suppose a sort of awakening of T in the unconscious of some people (experiment of Heller and Bergman 1953)

Instance 3 (mine): Two weeks before I had tinnitus, I went to my doctor for a dermatitis.

Joking with him, I said: "This issue is not important, be anything but not a tinnitus!" (I knew what it was, it was a nightmare for me since before, but I did not know how to prevent it, I just knew it was a huge problem and I was afraid of it). Good. Two weeks later, just after a concert, here: tinnitus. The nightmare came true. At the same time, my parents, in an attempt to help me -because I was hopeless- understood what tinnitus was. I asked my father, "But, don’t you ever hear anything? Have you ever heard noise or sounds in your ears? ". My father sat in a quiet room, focused on sounds and told me he heard a little whistle in his ear, but he never cared about that before and thought he had nothing!

Since then, my father has a tinnitus which is stronger than mine.

By then, two months went by for both of us. He was told that he had tinnitus due to a change in blood pressure. In my case, it was an acoustic trauma. Isn’t it strange? And now…my mother! She begun hearing whistles in her ears, luckily only temporarily (I hope she will not get tinnitus). But how can it be possible? I start thinking that tinnitus could be present at an unconscious level in many people. Or are all coincidences? Incredible. i DON'T THINK THAT THESE ARE COINCIDENS. No.

Nice to meet every of you in this difficult journey.

A.

PS: know i am trying

Clonazepam x3 5drops m/a/e
Delecit 600 m/e
Neyron 750 a
Nootropil 1200 m/e
Trental 600 e

And from tomorrow Campral 333 m/a/e

 

This is great but maybe you need to start working on a long term plan here - these drugs have side effects but they don't cure tinnitus they only lower its perception while you take them .

They don't do anything to help fix the broken pieces inside your ear - tinnitus is just a symptom of that.

So if you take those drugs for years then you may add other potentially worse permanent side effects in addition to permanent tinnitus.

Now you only have permanent tinnitus

My suggestion: phototherapy (LLLT) to help with nerve healing, and this does protect hair cells from noise too as per studies, and also wearing ear protection during the following 6 to 12 months outside or if its more than 60 db in order to give your ears the best chance to heal as much as possible as ears heal very slowly.

Since you are good at reading studies and asking around - you will find there are a lot of studies on LLLT and light therapy on the body . No side effects too.

 

Hi Bobby thank you,
LLLT its a possibility but there is just only a private doc. that practice it for T near my region (emilia romagna, north italy). And a lot of researches don't speak very well about LLLT .It is also very expensive. I don't know if try or not... I'm afraid to throw money away. Thecochlear damage is permanent. For the nerves/synapses that convert this damage into a chronic T... i do not know! There are people treat with LLLT with some positive results? I can't find anything around internet...

 

Your hissing sound changed into a sizzling sound - you may want to ask yourself why ...

Because the body has the ability to heal he ears to a certain degree - llllt is only helping the body to do it better and faster as time is also important here , the longer you wait the less likely it can be fixed .

It's not going to erase the tinnitus sound but you may get some improvements in the hearing scale and H.

I think it does help the nerve healing .

Not a cure but gradual improvements .

LLLT isn't really that expensive I bought my own device it costs 1600 for the cheapest one and that's about usd 135 per months as its a one year treatment

Also good to protect hair cells from future noise as per some studies.
For that beenfit alone this treatment is entirely worth the price even if it does not give any actual improvements in the worst case scenario .... You can protect your remaining hair cells without side effects that's important

T can get easily get worse if you are experiencing loud sounds again in the future and you are young so more chances even

 

Also you could consider enrolling in
The am -101 study since your still early on
Again no side effects so it's worth a try

 

Yes but unfortunatly this is the answer of aural team:

Dear,


Many thanks for your interest in our study.

Unfortunately, we do not have a trial open in Italy.

Participation in a country outside your home country is also not possible due to legal aspects as the trial only enrolls residents and native speakers.


We can only wish that your tinnitus will become more manageable and that you will find relief through other means.


Sincerely,

The Study Team

so... no hope.