Taking a Break, Wishing a Thank You and Starting Treatment with TRT

Hello Everyone!

I just want to post a quick message on the forum and thank everyone for all the help and support that they’ve given me over the past 4 months.

I will finally have the chance to start the audio portion of TRT (I get fitted next week), with the counselling part starting early next year. I am taking the recommendation that while starting this therapy that it’s best to stay away from the forms and chat rooms that relate to Tinnitus/Hyperacusis.

I aim to be one of the 80% that are able to habituate (or in my case re-habituate) to Tinnitus and hopefully reduce or remove my Hyperacusis all together. I am very lucky to be in the hands of two skilled TRT professionals (Tinnitus Clinic at St Pauls in partnership with idEars at Oakridge Centre in Vancouver BC, Canada) who have been working with patients regarding their Tinnitus and Hyperacusis for over a decade.

I look forward to working with them, placing most of my trust in them; with the aim to get better, resume my life and head back to school next fall.

A special thank you to @Dr. Nagler , @Zimichael , @Claire43013 , @billie48 and @Dr. Charlie who helped answer my questions (and there was many) and help give me some extra support during those early days/months of dealing with this new spike in my T, and getting some information on Hyperacusis.

Thank you again,

I will hopefully talk to you all once I am feeling better (or at least into a good chunk of my treatment) and am out in the world once again!

Cheers,

Kris M.

 

All the best with it, @kmohoruk. And please be sure to give my regards to Glynnis and Carol.

Dr. Stephen Nagler

 

Good luck with TRT, personally, TRT didn't work for me, as mine is really bad and maskers didn't work as white noise made it worse. But that's just me, it'll work, so long as your tinnitus isn't like 15,000hz bad lol

 

I'm sure that @kmohoruk is absolutely thrilled to hear that wonderful piece of news from you going into TRT. I've successfully treated numerous individuals with loud screaming tinnitus that match at 15K and higher whose tinnitus is unmaskable and moreover sensitive to white noise. Sorry TRT didn't work for you, but it does work for the majority of folks with the type of tinnitus you describe.

@Danny Boy, I wonder how you would feel if you were headed into open heart surgery and somebody on a cardiac "support" board posted that he knew somebody who died during open heart surgery, but good luck anyway. Doesn't send a real supportive message there, does it? Especially when most folks do great!

Kris, I look forward to hearing wonderful things from you upon your return.

Dr. Stephen Nagler

 

Hi @Dr. Nagler,

I have been in touch with Jackie Sheldrake in London and will hopefully begin TRT in new year (My Passport had to be renewed and takes 3 weeks).

I am very hopeful and looking forward to the TRT experience.

I am pretty sure the main reason I'm struggling with Tinnitus at all is that:

a) It is a very high Pitch - 12,000/13,000 Htz

b) It reacts to sound. EG. At night I have to sometimes turn off the Sound Enrichment as it doesn't like it and quietens down in Silence. When I wake I am T free until some sound sets it off again and it starts to increase. Sometimes in quiet rooms I need sound enrichment. It seems variable in this way in terms of sometimes liking sound and sometimes rejecting it.

I am pretty sure if I had a lower pitched T which didn't vary I would have become accustomed to it by now and habituated pretty well. In fact that seems like a nice scenario to me now.

The main reason I am doing TRT is your endorsement of it. You have convinced me it is a viable and worthwhile treatment to attempt and I am grateful that I at least have this avenue to explore and give my best shot. I cant see what else there is available.

My question (and I hope I am not overstepping the mark) is if sound devices and enrichment are going to be an issue is it still possible to habituate using TRT via the counselling element or are there ways that sound can be used in my case. Or is it a case that I may have Hyperacusis and once this is taken care of the reactive component of the T will change and it will become more receptive to sound therapy.

I apologise if the question sounds negative. This is the opposite of my intention. I am fully intent on giving TRT my best shot I am just in the dark I suppose as regards the specifics of non standard T protocol.

Feel free not to answer this post if it doesn't suit. You have been more than generous with your time answering related posts of mine before on this topic and I greatly appreciate the encouragement to pursue TRT and try and get myself out of this black hole.

Many thanks

R

 

In TRT the devices are an issue only if the clinician does not have the knowledge and experience to tailor the sound therapy to whatever challenges the devices might otherwise present. With Jacqui Sheldrake that will not be a problem. She is the epitome of knowledge and experience.

All the best -

Dr. Stephen Nagler

 

@Dr. Nagler

That's music to my ears. Great stuff.

Now I'll finally be quiet and go off and get rehabilitated. There'll be a nice bottle of Middleton Whiskey in it for you should I habituate

R

 

I'd take you up on it, except the second I do some naysayer will up and scream that I'm making a profit from TRT. Go figure!

Dr. Stephen Nagler

 

Best of luck, I wish you much success!

 

@Dr. Nagler

Have no fear - I'm a man of my word. If a nice bottle shows up at your office one day you'll know who its from. No one needs to know.

Slainte

 

Ahhh. I can taste it as we speak!

Dr. Stephen Nagler

 

Do come back and let us know how it went...

 

@Dr. Nagler
Sorry to ask you here, but my new noise, this high pitch hiss reacts to noise just like @RCP1 explained.
Is this reactive tinnitus or hyperacousis?
How is this treated?
Thanks!

 

Hyperacusis and what some folks here call "reactive tinnitus" are two different things. They can sometimes occur together, but they are not related.

In hyperacusis, external sounds that are well tolerated by others sound uncomfortably loud. Whether or not a person's tinnitus is sensitive to external sound is totally irrelevant in terms of whether or not a person has hyperacusis.

"Reactive tinnitus" (a lay term that I really dislike because it can be so misleading) presumably is related to the response of a person's tinnitus to an external sound.

The first step in treatment, of course, is an accurate diagnosis. If a person truly has hyperacusis, the treatment involves purposeful systematic desensitization. My preference is to use the Category 3 TRT protocol.

If a person has "reactive tinnitus," my preference (again, after an accurate diagnosis is obtained) would be TRT Category 1 or Category 4 protocol. If a person has both conditions, the initial protocol is determined by the dominant condition.

Now that's how I treat individuals with these conditions. And I've been doing it successfully for a long time now. Others use different approaches.

Dr. Stephen Nagler

 

Yeah, you're right. I wasn't think about that at all, I apologise. Anyhow, I wish TRT would work for me, but white does these noise generators have to be white noise? It just send my tinnitus soaring to unbelievable levels...

 

@Dr. Nagler
Great explanation.
Today I was attending the online conference and listening to the conference via laptop speaker.
Many times when I was listening to the speaker the sound would get distorted. (distortion in my ears not the conference audio issue) Is this so called "reactive tinitus" and is there anything simple I could try to do to fix that?
I understand there are protocols you follow that are hard to explain here, but if you would have to give simple recommendation what would that be?
For example: Lower the volume until it is not reactive, don't care and get used to it, ignore it, etc

 

For individuals who do not tolerate wearable TRT devices that emit white noise, very often the problem lies in how exactly the white noise is introduced. There are lots of possible tweaks there. Also the devices we recommend in my clinic can be tailored to emit pink noise, which is equally effective and sometimes tolerated better.

And then there is the issue of folks who think they are doing TRT because their clinician says they are doing TRT - but the clinician really doesn't know anything about TRT to begin with. Those folks have not failed TRT. They never did it in the first place.

Dr. Stephen Nagler

 

@bwspot posted:

Dr. Nagler
Great explanation.
Today I was attending the online conference and listening to the conference via laptop speaker.
Many time when listening to the speaker the sound would get distorted. (distortion in my ears not the conference audio issue) Is this so called "reactive tinitus" and is there anything simple I could try to do to fix that?
I understand there are protocols you follow that are hard to explain here, but if you would have to give simple recommendation what would that be?
For example: Lower the volume until it is not reactive, don't care and get used to it, ignore it, etc

..............

I apologize, but I cannot get into a discussion about "reactive tinnitus" beyond what I have already stated. "Reactive tinnitus" is a very misleading term that arose from lay discussions on Internet sites. In TRT folks with "reactive tinnitus" by and large do just as well as folks whose tinnitus is not exacerbated by sound. Even TRT Category 4 patients, in whom the noise-induced exacerbation typically lasts more than 24 hours, do well, although not as well as those whose exacerbation last less than 24 hours. The type of distortion you describe is something else entirely and requires additional audiological testing to fully track it down.

In terms of the protocols themselves, there is nothing "simple" (your term) about any of it. If there were, everybody could simply pick up a book and be done with it.

@kmohoruk and @RCP1 are going about it right, in my opinion. They have done their due diligence and have sought out the assistance of knowledgeable and experienced clinicians. I wish everybody would (or could) do the same.

Dr. Stephen Nagler

 

@kmohoruk and @RCP1 good luck to both of you. TRT certainly helped me. Nowadays most of the time I'm at a level of "not giving a damn" about my tinnitus. TRT played a massive part in that.

@RCP1 Jaqui Sheldrake is my TRT clincian. She is brilliant. You are in safe hands.

 

@adam2525

Thanks Adam I am seeing her on Jan 8th.

Thanks for the words of encouragement.

R

 

@Danny Boy
I dont understand. I thought that you are currently taking Retigabine, in fact upping your dosage and that your T has been and is really effectively reduced. So is this non tolerance of white noise pre retigabine or is it current.
Sorry to ask but havent heard from you in a little while so ....................

 

@RCP1
How are you?
Can you please give us a guideline as to how much it costs with Jacqui Sheldrake. What she charges? Is there no TRT on the NHS that you could use?
I know that you are in Ireland which means a fair long distance trip for you to her and presumably you will have to stay in noisy London.
So I am guessing that the crainialsacral massage that you were having didnt work? (did i get that right, cranial sacral massage? I know that you were doing some kind of therapy like that recently but not sure exactly what is was called).
love to hear from you...
pm me if you prefer to discuss or disclose her fees in private......or anything else i have asked if it is too personal on public.....thanks...

 

@amandine

Hi amandine. I will pm you the fees when i get a handle on them.

Ok as regards treatment. Ill be concise.

After 3 months of research and trying out various treatments myself and reading up on all the available 'help' there is out there for Tinnitus I have come to the conclusion that the only and I mean only sustainable and safe treatment with any hope of success is TRT.

As regards the cost and what i have to do to get it. It is immaterial. I need treatment i need it now and i need the best supplier i can get. Thats it in a nutshell.

Ill be in touch via pm.

R

 

@RCP1

Cheers...............I look forward to hearing from you

 

Thank you.
So the distortion I am talking about, is there any general name for it?
It seems to me that it is something that is hard to define on this forum.

 

If voices and sounds come across to you as distorted, I would call it ... distortion. Instead of being concerned about further defining it on a tinnitus board, I would rather see you explaining precisely what you are experiencing to your ENT and audiologist!

Dr. Stephen Nagler

That is precisely what I did back in 1994. Reviewed all my options after a number of false starts. Did my due diligence. Located the very best there was, 700 miles away in my case. And did exactly what I was told to do.

For me, tinnitus was as serious as a heart attack. And I went about becoming whole again with precisely that in mind.

Dr. Stephen Nagler

Excellent clinician. Excellent result.

Most folks I have encountered on the boards who have "failed" TRT didn't do TRT at all. They just thought they did. Or they did something else and called it TRT.

Friends, if you are serious about your tinnitus and serious about TRT, then please do not cut corners. It just ain't worth it.

Dr. Stephen Nagler

 

@kmohoruk ...Hey sorry, a bit late seeing this thread as did not show up on my email or something.

Very best to you and good luck indeed with your TRT, etc. Please do come back at some later date and let us know what you experienced and how it works out. I realize that is often hard to do once habituated or "beyond the T" as have been there three times myself...but the information would be valuable nonetheless.

Take care, Zimichael

 

I'm happy for your Kris! You're going to do phenomenally well, I can tell, as you have a light and optimistic spirit. Make sure you come back to share your success story with us.

 

Good luck with the treatment mate, you will do just fine.

Oh and give T a big kick in the butt for me when you are habituated