Silence After 4.5 Years (Medications from Company Called Decola)

[Margrietje]

[...] they didn't see any serious hearing damage on their (limited) audiogram.

As we know already, many many people on this forum have perfect audiograms but still suffer from noise induced tinnitus.
(I have a nudge of 15 dB at 4000 hH in my right ear, I'm assuming that's the tinnitus engine). [...]

It's been four years of course, but I'm quite sure that I did every hearing test that was available at the UZ Antwerp. Some measured pressure, some counted (?) the tiny hairs in my ears (again, no clue how to call them in English), and the hearing tests must've been very specific as well: I spent half a day doing them. Antwerp is doing a lot of research regarding tinnitus, not sure if that makes them better equipped for normal patients. The results were "extremely" perfect for my age. Above average.

I experience my "extraordinary" hearing as well every time I freak out over sounds nobody hears, not even my younger sister.

I just wanted to add that I don't think that it's impossible. I can question it and blame it on maybe the tiniest loss I can find on my audiogram (if I had it with me in the first place), but then again every person with tinnitus can point that out as the cause. The fact that not everyone with hearing loss is suffering from tinnitus makes me believe that there must be another factor causing it.

 

[Margrietje]

@Margrietje Could you please tell us a bit more about the origins of your tinnitus? What you think caused it and what your investigations led to? I also think mine is noise induced, and I'm already taking a bunch of supplements. I'd like to know more before potentially spending money on these pills.

I don't know what caused it. People have blamed it on my dry skin (sometimes eczema), on PTSD, on extra sensitive hearing, on ... But never on any damage. Not knowing is frustrating, so in some way your question is frustrating as well. I understand that the pills are expensive, but please don't hold me accountable if you buy them. The one thing I'd like to repeat loud and clearly is that you should have your intestines tested first! It's bullshit taking those pills when the psychobiotics will ruin your balance instead of improving it.

 

[KotaDomowa]

I started taking these drugs this morning.

 

[Ben Winders]

People have blamed it on my dry skin (sometimes eczema)

Funny coincidence - I have periods of very severe eczema in my face (neck, chin, sides of nose) and I was looking into a correlation with my tinnitus last week (for the first time since I got it, really).

Problem is I have had this eczema for most of my life - on and off, still don't know what is causing it, maybe lactose - and tinnitus only since April this year.

 

[Gabriel5050]

@Margrietje I am sorry the question frustrated you. It does that to many here. Also, no one will hold you accountable for their own actions.

I consider countries like Belgium to be developed, even more so university hospitals there. So if they couldn't find a cause for yours there, it makes me reluctant to think they'll find mine in Eastern Europe. I've also done all the tests I could and asked for multiple doctor's opinions. It's surprising how universally bad ENTs are.

 

[Ben Winders]

I started taking these drugs this morning.

Awesome. Good luck. Keep us updated pretty please.

 

[twa]

Doctors are clueless.

I went to UZ Leuven and UZ Gent (in Belgium) (both university hospitals) and another clinic in Portugal (where I have my residency).

Both UZ Leuven and UZ Gent said it was probably just something in my neck, and they said that only because they didn't see any serious hearing damage on their (limited) audiogram.

As we know already, many many people on this forum have perfect audiograms but still suffer from noise induced tinnitus.
(I have a nudge of 15 dB at 4000 hH in my right ear, I'm assuming that's the tinnitus engine).

My first 2 months were absolute torture. Woke up with a low buzzing truck noise in my head (right side) - Now that has been replaced (although I know a way to bring back the low buzz > sleeping on my bad ear) with a static hiss that - after a long day of MacBook-fan noise for example - turns into a piercing EEEEE.

Also fans, vacuum cleaners and hairdryers make my ear(s) go EEEE on top of the noise.

Anyhow - while I don't assume the Decola stuff mentioned here will work for me (noise induced for sure) it's still interesting of course.

Does your EEEE sound resemble a high pitched tea kettle? I read that the hissing sound is a good sign. How long have you had tinnitus? Do you also have hyperacusis?

 

[Bill Bauer]

- Cerinax (so called "psychobiotics", they improve the relationship between your intestines and your brain)

Are you saying that you've had loud tinnitus and it has faded within days of you taking that medication? Can you hear your tinnitus if you wear earplugs in a silent room?

 

[Ben Winders]

Does your EEEE sound resemble a high pitched tea kettle? I read that the hissing sound is a good sign. How long have you had tinnitus? Do you also have hyperacusis?

It's obviously hard to subjectively describe the sounds I'm hearing/I've heard:

Onset: May 1st 2020 (woke up with it)

First month (torture): low frequency brrrrrrrr (that sound you get when you put a speaker on high volume and you put the audio cable not all the way into the audio source connector) in right ear.

After that first month (and currently): the typical (but louder) electric buzz that you get when you've spent the night in a loud club. The EEEE's I was describing are sort of like the electric buzz getting louder and "stabbing" / "peaking" out of the regular buzz. These spikes only happen in right ear.

These EEEE's come out randomly during the day and also at the end of the day when I've been working on my MacBook the whole day > it reacts to the fan noise of the mac which is notoriously loud.

I had hyperacusis in the first 4 months: water falling in the sink , shower, opening jar of jam, ... that seems to have become a bit less now (water falling in sink does not trigger it anymore)

 

[Ben Winders]

@Margrietje,

You said you did tests in UZ Antwerp where they counted the hair cells in your inner ear?

I have never heard of a test like this.

Would you be able to tell me which doctor / team you contacted at UZA to get this test done?

 

[Margrietje]

Funny coincidence - I have periods of very severe eczema in my face (neck, chin, sides of nose) and I was looking into a correlation with my tinnitus last week (for the first time since I got it, really).

Problem is I have had this eczema for most of my life - on and off, still don't know what is causing it, maybe lactose - and tinnitus only since April this year.

Same situation here, ups and downs. What about your earwax? Doctors believe my dry earwax must be related to it.

 

[Ben Winders]

Same situation here, ups and downs. What about your earwax? Doctors believe my dry earwax must be related to it.

I have a USB camera to check inside my ear - no earwax - a bit of red/bruised looking spots near the eardrum - on both sides (while mostly right ear is where the tinnitus is).

In any case the 3 doctor that looked into my ear and the MRI scan concluded that there were no "external" factors (like earwax, fluids, etc.) causing my tinnitus.

 

[Margrietje]

Are you saying that you've had loud tinnitus and it has faded within days of you taking that medication? Can you hear your tinnitus if you wear earplugs in a silent room?

But what does silence sound like, right? After 4.5 years, I feel a huge difference. Of course I hear "something" sometimes (I've had a very short 2-minute beep twice), or a low silent buzzing now and then, but to me, it's silence. I don't use earplugs because it jams my ear wax, but I use this safety headphone a lot https://www.bol.com/nl/p/vanderfiel...ermer-voor-volwassenen/9200000075022064/?s2a=. People don't seem to notice that it isn't a "normal" one. I'm not very eager to put it on right now just so I can listen to "my ears", but I was wearing it while studying today (the neighbours are renovating) and I didn't hear anything noisy or discomforting.

 

[Margrietje]

My tinnitus started the earliest comparing it to the other people here. I wish my mom would give me some credit for that. It's definitely not easy being the "very intelligent" kid that "went mad" all of a sudden. If I fail an exam at university, it's always because "I'm out of my mind". Sorry for complaining, it's just one of the hardest parts for me and I wanted to share that.

 

[Bill Bauer]

After 4.5 years, I feel a huge difference.

Did it take 4.5 years to fade, or has it faded within days of you taking that medication?

 

[Adaś]

My tinnitus started the earliest comparing it to the other people here. I wish my mom would give me some credit for that. It's definitely not easy being the "very intelligent" kid that "went mad" all of a sudden. If I fail an exam at university, it's always because "I'm out of my mind". Sorry for complaining, it's just one of the hardest parts for me and I wanted to share that.

First of all, I am happy to hear about your success. I wish your new silence state will be permanent.

And I can relate to your experience. My parents were not very forgiving when I was kid and then young adult. I was expected (for some reason) to get best grades at school and at university and if I didn't I was bashed for my failures, but never really gratified for successes. And that was despite fighting scoliosis when I was a kid. When I was 22 I had first tinnitus onset, that lasted 2-3 months and it resolved by itself. Nobody was concerned much about it at that time, neither my parents nor the doctors I asked for help. I was treated by them as if I was imaging things or trying to find imaginary excuse for being tired after very exhausting series of exams at university. And then in 3 months since the symptom was gone, nobody advertised me to protect my hearing or anything like that. I've learned nothing back then.

Then I got 2nd onset at age of 33, and tinnitus became permanent. I am 41 now living with tinnitus. Long story short, it took a while for my parents to become emphatic. But at some they did.

So maybe your mom will understand it at some point.

 

[Margrietje]

Did it take 4.5 years to fade, or has it faded within days of you taking that medication?

It faded within days of taking the medication. I had another spike in the meantime, but it was again a less scary and definitely shorter one than my pre-drugs ones. Plus, I had way more spikes before I took the medication. Right now I'm trying to overcome some fears like eating crunchy stuff, but potato chips still scare the sh*t out of me. It's hard convincing myself that it's not dangerous. Tomorrow I'll try again!

 

[Shelly75]

Hi @Margrietje
Thank you for sharing your story, are you still having silence? I've ordered these supplements today

 

[morgothaod]

If anyone can find a USA alternative, please share!

 

[Ben Winders]

@KotaDomowa

Anything to report on your end?

 

[friend74]

Wow, that's 120 Euros for all 3 of them (3 x 90 pills). Let's wait a bit.

 

[Ben Winders]

Wow, that's 120 Euros for all 3 of them (3 x 90 pills). Let's wait a bit.

(off topic: Exact same (expensive) price for 90 pills of Tru Niagen Nicotinamide Riboside (NAD+).)

The amount of cash all of us are dropping on this beast is insane - and 90% of these things arent even working.

 

[twa]

Weirdly, I can't find any of these medications on Google. I totally believe you but I'm not getting any search results.

I found them when I did a search under psychobiotics.

 

[Cher2]

I found them when I did a search under psychobiotics.

Hi twa ....

Did you find something that was equivalent to the Decola? Just curious.

 

[twa]

Did you find something that was equivalent to the Decola? Just curious.

No, but others in the thread looked up the individual probiotics and found them.

 

[maruyumes]

@Margrietje

Thanks for the inspiring post, I'm really glad your tinnitus is finally gone.



I had a similar story like yours: I went to several ear doctors, they did all sort of tests that showed no damage of the ear or the auditory system (I even did the test that counts the "tiny hairs").

A retired doctor that used to treat me as a kid said that tinnitus could be caused by stress starting from my intestines.

I would like to get my intestines tested as well and see if I can do a therapy similar to yours.

Can I ask you the contact details of the doctor that helped you? (the one that understood that your intestines were causing the "stress" in your brain)

In case you prefer I can give you my email address so you can share his/her details in a more private way.

It would be very helpful for me, many thanks in advance.

 

[Shelly75]

I've tried these for a week, no change at all

 

[Margrietje]

I've tried these for a week, no change at all

I'm sorry. Again, I wouldn't advise anyone to buy the drugs if you never got your intestines tested. If your intestines aren't the cause, those pills will never be the solution. Just repeating what the doctor said.

I'm still doing fine by the way. A week ago I didn't take the pills for three days because I ordered the second dose a bit too late: my ears stayed quite stable (some earfullness and dizziness), but my digestive system was veeeery upset about everything I ate. Quite unusual, plus I didn't eat anything special. Again, that might've had another cause, I'm just sharing it.

 

[Margrietje]

A retired doctor that used to treat me as a kid said that tinnitus could be caused by stress starting from my intestines.

I would like to get my intestines tested as well and see if I can do a therapy similar to yours.

Can I ask you the contact details of the doctor that helped you? (the one that understood that your intestines were causing the "stress" in your brain)

In case you prefer I can give you my email address so you can share his/her details in a more private way.

It would be very helpful for me, many thanks in advance.

Hi! I don't feel comfortable sharing this old doctor's information with strangers. I don't even know where you live. He probably doesn't speak English, and I'm very afraid he will be spammed because his information was shared. Especially because he didn't intend to treat my ears, he just believed I would feel better if I stabilized the results of my intestines test.

I don't know a lot about the quality of intestines tests in foreign countries, but try to get an advanced one. Second step is finding the right doctor, probably an open minded one that also believes in "alternative" medication. It took me three years after the test to find the right doctor.

 

[Shelly75]

I'm sorry. Again, I wouldn't advise anyone to buy the drugs if you never got your intestines tested. If your intestines aren't the cause, those pills will never be the solution. Just repeating what the doctor said.

I'm still doing fine by the way. A week ago I didn't take the pills for three days because I ordered the second dose a bit too late: my ears stayed quite stable (some earfullness and dizziness), but my digestive system was veeeery upset about everything I ate. Quite unusual, plus I didn't eat anything special. Again, that might've had another cause, I'm just sharing it.

That's ok it's not your fault, I was desperate to try anything. I'm glad you're still getting silence and good days