Repeated Modified Nerve Blocks and Auditory and Non-Auditory Nerve Stimulation

@Tom Parijs, I admire your determination to fight this tinnitus beast, including fundraising. It surely drew public attention in the Netherlands which is what we need the most (besides effective treatments of course). It must have been quite an effort to organise it.

I’m from Poland but I have a family in the Netherlands, if the treatment works for you and you manage to bring it back to Europe, I would be eager to try it.

 

Thank you!

I have also been asked to go on TV programs and live talk shows. But it became too much for me until Korea. I have agreed to go after Korea. So it will once again then get the attention. And will I represent us as tinnitus sufferers.

Of course I would like to bring the treatment to the Netherlands or other western countries to help others. But let's wait and see what it will bring us first.

 

Have you heard about Prof. Dirk de Ridder who runs the clinic brai3n.com in Ghent, Belgium? If there is anyone in Europe that might be interested to test innovative tinnitus treatments coming from other parts of the world, he’s the guy.

 

Aw man, I think it's awesome how we're doing this now, openly bullying our fellow sufferers!

Can I get in on this?

Let me give it a go.

Hey @Tom Parijs, hope the treatment does something (positive) for you, and as others have said, thank you for raising some awareness of our dreadful illness. Also, I absolutely recommend you meet @Chinmoku if you can while you're in South Korea; guy is super smart, friendly and most importantly, real. He, like myself, has traversed the full spectrum of this condition and knows the reality of how merciless it truly is. People within this sphere will never sugar-coat the reality, because in the grand scheme of things, to do so is unhelpful (but not so many people here get that, for whatever reason).

Anyway, now for the fun part. Character assassination.

I personally think you (and any other discerning newcomer to the forum) should consider blocking/ignoring @BrysonKingMe and @2noist.

Why?

@BrysonKingMe:

• Has publicly ridiculed sufferers who caution against the use of headphones (despite a large portion of our user base having developed tinnitus from headphones). Responded to to those who addressed said ridicule by telling them to "get off" (his) "profile page with" (their) "negativity".
• Has publicly ridiculed sufferers who said they were leaving Tinnitus Talk, only to come back and resume regular use shortly afterwards (perhaps because they developed a severe spike after said announcement? Bryson dun care （°々°）).

@2noist:

• Called sufferers who refused to undergo, and opposed mandates for, an experimental genetic therapy that has killed and disabled a f*ck ton of people, conspiracy theorists.
• Said she was "proud" of people who underwent said experimental genetic therapy that has killed and disabled a f*ck ton of people, and that undergoing it showed you "cared about others", despite it being widely acknowledged that the EGT did not prevent transmission or infection of the virus it was designed for.

I suppose you should block me too while you're at it, because... well just because someone else is going to say that now, so I thought I'd beat them to it.

Anyone else we've missed that @Tom Parijs should block for not being positive enough (on a health forum that caters to people with what is basically a terminal illness, no less)? Please add them below boiz. Many thanks.

 

It would be nice if we could stop with the immaturity - it is of no help to anyone.

 

It would be a good idea to close this thread. No evidence the treatment works, it is expensive and leaves many worse. Pointless.

 

I agree we can safely settle on that conclusion if the treatment (also) does nothing for @Tom Parijs.

 

I'm usually against bullying but @AnthonyMcDonald is one of the biggest cunts on Tinnitus Talk, 100 percent deserves it.

That's not how that works, at all.

The only way we can "safely" conclude anything would be if other clinics would replicate the study.

Could you give some examples of these treatments? Their website only reads neuromodulation as a treatment method for tinnitus.

 

I take it you're still undecided on Silencil and the government super soldiers then?

 

Brai3n is doing a clinical trial for Lenire now.

 

You'd be a "cunt" too if you had to suffer through an entire year of suicidal permanent worsenings from butterfly farts while people tell you you're not positive enough

 

Stop beating around the bush and tell us what you really think.

 

Ehh, that’s not entirely true, I’ve seen positivity in some of his posts. But yeah at the same time, I do get weird gatekeepy vibes from him. It’s like he’ll put up heaps of obstacles to make you prove you’re severe or unstable enough to receive recognition and be welcomed into his fold. I personally think it’s unproductive and needless considering this is a support group forum for all people regardless of severity level. But hey, maybe I’m looking at this the wrong way.

^
His profile pic is freaking badass though. Reminds me of someone in one of my Japanese animes.

 

You only have had tinnitus for a year, I have had it for a decade. I've been suffering from painful hyperacusis for two years now. You don't see me gaslighting other people on here because their situation is better than mine. The severity of your suffering is not an excuse to downplay other's.

You posted a success story just months ago, why are you bitching again that you have the world's worst tinnitus?

I've never heard of that before, sounds absolutely hilarious.

 

Hey @Damocles.

Thanks for your information. Yes, I got a lot of doubts about the treatment there. But I can't let the man I've been in touch with go alone. We have become friends and if I let him go alone, it would be a big disappointment for him. I want to show solidarity.

If I don't notice a difference after 10 to 15 treatments, I will stop immediately. And if my spikes don't go down after the treatment, I'll stop too.

I will keep you posted!

 

No, I bitch that I *had* the world's worst tinnitus

@Tom Parijs, sorry for misunderstanding your situation. I'm so glad (and sad) our community has someone like you who can bring this condition to public. This is what we gravely needed.

 

If you truly had the "worst" tinnitus in the world you wouldn't have improved by 90 percent within a year.

There are people with tinnitus who have suffered years and years on end, struggling to keep on living and remain hopeful, but eventually succumbing to suicide, leaving behind friends, sons, daughters, mothers and fathers.

The fact that you think you can come on here with your big mouth and think you can be the judge of whose tinnitus is severe enough to be deserving of empathy, either means you have an utter lack of social awareness, or you simply enjoy making people miserable.

I do wish you the very best and I hope your tinnitus will continue to improve, but please, for the sake of yourself and everyone around you, do something about that shitty attitude of yours.

 

Brother, I didn't improve by 90%, it was a weird situation that happened and I instantly relapsed.

I do admit that I have been a dick in some posts. However, at that level of suffering being bitter and jealous of anyone better than me was all I could do.

In any ways, thanks for the kind words.

 

Honestly wishing you the best of luck with this, @Tom Parijs.

I'll be praying that you and your companion might see some results, but more critically, get through this safely and without any worsening.

I have to say, I was never particularly invested in @BrysonKingMe's results. Nothing to do with our obvious lack of camaraderie, but because he has what we sometimes refer to as fluctuating tinnitus (marked by daily changes in severity), which is both dissimilar to my own consistent tinnitus and also, in my (also his own) opinion, makes him a difficult test subject from whom one can gauge reported results.

I was however, paying close attention to @Chinmoku's experience (his tinnitus being more like my own), and was quite dismayed by his second update.

Taking that into account, I don't think anyone would blame you or the other guy for changing your mind(s) and backing out. Something to consider, most definitely.

But again, if you're going ahead with things, then I'm praying for the two of you, and hoping against all odds that your outcome(s) might pleasantly surprise us all.

In any case, whatever happens, or whatever you decide, you're one of us now, and have already earned a huge amount of respect just by your raising of funds and awareness.

All the best my friend.

 

@Damocles, thank you very much my friend! I will keep you posted!

 

Integrative Treatment for Tinnitus Combining Repeated Facial and Auriculotemporal Nerve Blocks With Stimulation of Auditory and Non-auditory Nerves

I would like to try above up to 10 times. My left ear has too much static type noise that is difficult to tolerate.

 

I see my post is the same as the first poster in this thread. I did have one auriculotemporal nerve block in the past and it knocked out my tinnitus for one day.

 

I’m under the impression @Chinmoku may have had bad results in part due to taking Clonazepam, which apparently can increase tinnitus when Lidocaine is injected? And wasn’t @BrysonKingMe also on the same stuff?

Seems like we need more data; I do think it’s important that we keep this thread going until @Tom Parijs reports back for better or worse. Hopefully he gets some relief.

 

Both were on 0.5mg daily, if I'm not mistaken.

 

@Chinmoku, any news? Thinking of you friend.

 

I think @Chinmoku is taking a break from electronic devices to rest his ears.

 

As @DebInAustralia said, I'm reducing online presence to rest my eyes. Excessive screen time could worsen tinnitus due to both eyes and ears being connected with the olivary organ. It's far fetched but who knows. I'm desperate. Other than that none of the medications we tried helped and will have to take off in one week.

Met briefly a new western patient, for them the Lidocaine works as it lowers the tinnitus temporarily after the session so they can try the treatment with some confidence. It's not Tom and I don't know if they are in the forum.

Again thank you to anyone concerned about me. I'll try to survive the unsurvivable.

 

It's been 10 days and I have not gotten any response to my email to the Korean clinic.

To the people who have contacted the clinic in South Korea, how long did you have to wait for an answer? Did you use English as correspondence language or did you write in Korean (perhaps using translation services)?

What address did you use for contact? The one I contacted (from the original publication) has not given me any response.

 

This is the email address I used when I was corresponding with them:

hunman0405@naver.com

 

I have a terribly loud whine in my left ear every morning. I had a left ear barotrauma from an airplane descent in 2008. It usually fades as the day goes on but the pattern of waking up with a siren in my left ear really is sickening. My left jaw is bone on bone that is crunchy that may or may not be causing it.

I would sooner have the auriculotemporal block several times than jaw surgery. I feel for all of you that have a similar condition to mine or worse.