Ironically, Reading About Treatments Is Making Me Feel a Little Worse

[addot]

Any of you ever felt this way as well?

Though I was a long time lurker on TinnitusTalk before I made my first post, I didn't pay much attention to the success stories or possible treatments until now. At first, reading about stem cells, trobalt and LLLT gave me huge hopes of one day finding actual relief from my T and, more importantly to me, my distorted hearing. For the past 2 or 3 days I sat and read about these methods as much as I could during my spare time...

Then it overwhelmed me.

One of the reasons was the sheer number of things that might work. I plan on starting to take NAC this week, but other than that there is also acupuncture, magnesium, gingko biloba, lidocaine... each one works for some people and does nothing for the others. The other issue is that I simply can't afford (or even have access to) most of these treatments for the foreseeable future.

It feels as if, since I discovered that my T can be improved, I am "wasting my well being" living like this... I don't know if it makes sense. Don't get me wrong: I am not hating on treatment reports... open discussion about possible treatments is not only great but necessary. It's just a very confusing feeling. Has anyone gone through this as well?

 

[Kelvin]

Concentrating on T (Including reading loads of posts here) can make it more noticeable. If you think about it...BOOM there it is !! The trick is ignoring it, or being so busy you don't focus on it.

As I write this I am starting to hear my hissssss.

There are lots of helpful folk on here who may be able to help with tricks and tips.

One post I read said imagine Two scenarios

1) You wake up...and your house is on fire...in this case you probably won't even hear your T whilst escape your home. Your brain is busy on other things.

2) On another day you wake up...and all is quiet...there is not much planned for today...in this scenario you will probably start to hear your T and concentrate on fighting it and hating it. Your brain will get busy bringing it to your attention.

I realise as much as anyone with T that ignoring it is not easy.

You will find YOUR way of making it shut up or get quieter !

Wishing you a peaceful day soon my friend.

Its the weekend, lets party !! Quietly....

 

[InfiniteLoop]

@addot

You are very confused. The reality is that basically nothing works, and one gets anecdotical comments that in most cases can not be proven. Some people post temporary relief, or just improvement that can happen spontaneously over time for T in early stages. Chronic T has many up and downs and we are very prone to placebo effects: thinking that we are getting better because we are doing something about it. Personally, I had zero benefit from NAC, magnesium, acupunture, etc.... Trobalt has benefited some people at the risk of significant side effects, LLLT is not really serious science, and stem cells are not ready at all to be effective for T. Use your critical thinking!!! We are very far away from effective T treatments sadly.

 

[Alue]

@addot

You are very confused. The reality is that basically nothing works, and one gets anecdotical comments that in most cases can not be proven. Some people post temporary relief, or just improvement that can happen spontaneously over time for T in early stages. Chronic T has many up and downs and we are very prone to placebo effects: thinking that we are getting better because we are doing something about it. Personally, I had zero benefit from NAC, magnesium, acupunture, etc.... Trobalt has benefited some people at the risk of significant side effects, LLLT is not really serious science, and stem cells are not ready at all to be effective for T. Use your critical thinking!!! We are very far away from effective T treatments sadly.

Harsh, but I can't disagree with anything you said. And that's even more depressing. We are all desperately grasping at straws here.

 

[addot]

Concentrating on T (Including reading loads of posts here) can make it more noticeable. If you think about it...BOOM there it is !! The trick is ignoring it, or being so busy you don't focus on it.

As I write this I am starting to hear my hissssss.

There are lots of helpful folk on here who may be able to help with tricks and tips.

One post I read said imagine Two scenarios

1) You wake up...and your house is on fire...in this case you probably won't even hear your T whilst escape your home. Your brain is busy on other things.

2) On another day you wake up...and all is quiet...there is not much planned for today...in this scenario you will probably start to hear your T and concentrate on fighting it and hating it. Your brain will get busy bringing it to your attention.

I realise as much as anyone with T that ignoring it is not easy.

You will find YOUR way of making it shut up or get quieter !

Wishing you a peaceful day soon my friend.

Its the weekend, lets party !! Quietly....

Hey thank you! Really appreciate it. This recent spike in my T is really bringing me down, I'm well aware that I am monitoring and looking for it all the time. I'm trying to keep busy though, if by busy you mean playing a bunch of games! (no seriously they really shift my focus from constantly thinking about T)

@addot

You are very confused. The reality is that basically nothing works, and one gets anecdotical comments that in most cases can not be proven. Some people post temporary relief, or just improvement that can happen spontaneously over time for T in early stages. Chronic T has many up and downs and we are very prone to placebo effects: thinking that we are getting better because we are doing something about it. Personally, I had zero benefit from NAC, magnesium, acupunture, etc.... Trobalt has benefited some people at the risk of significant side effects, LLLT is not really serious science, and stem cells are not ready at all to be effective for T. Use your critical thinking!!! We are very far away from effective T treatments sadly.

I agree that the best way to approach these treatments is with a hefty dose of skepticism, but is it so? From what I've read, Danny Boy and ATEOS report permanent improvements, among other users. It seems to me that 90% of the treatments fail 90% of the time*, but there is a slight chance that something might bring relief. All I'm saying is, if I could, I'd like to check them out... but I can't, and it bums me somewhat. Maybe someday.

(*in a manner of speaking! not actual data lol)

 

[linearb]

@InfiniteLoop I appreciate where you're coming from, but I don't agree, for two reasons:
* there are a number of promising treatments based on entirely new approaches in the pipeline, a few of which have already shown positive effects in human volunteers. I expect that the one technology which I know the most about may become a consumer reality within the next decade. I don't think that any technology will help all tinnitus patients, because I believe tinnitus is a symptom which occurs as a result of a huge and disparate set of underlaying problems.

* speaking personally, I believe that I have significantly improved both my reaction to my tinnitus, as well as the actual volume of my tinnitus, over the last 5-10 years. This has been a painstaking throwing-stuff-at-the-wall process, and I do not believe that my strategies will necessarily benefit anyone else...nor, necessarily, that I may not still endure worse tinnitus in the future as I age. But, if I had just thought "welp, I'm screwed, better settle in to a lifetime of misery and depression" at the outset, I doubt if my life today would be as basically pleasant and fantastic as it is. So, I think there is a kind of complacency we can find in pessimism, and I think it's a trap.

 

[bill 112]

Well I'm going to get pumped with Stemcells next month, if it works for me(and believe me I'll know)then it's safe to say it's effective.

I'm not expecting haircells to magically reappear from it, according to my audiograms(0-16000hz)I have minimal loss if any so that's not what I'm aiming at.

I'm aiming at auditory nerve fibres which detach from the haircell after trauma and remain there for years after, MSC's have been proven to initiate a repair response and secrete growth factors in these fibres once they get to their target destination and this is what my goal is for now, to do everything in my power to get these cells where they need to be and hopefully see improvement in my body disabling H.

Stemcells are still somewhat experimental but it's an experiment I'm willing to try and pay for, I've nothing to lose but much to gain so why not?

I have tried many things and seen no improvement but that's not to say it hasn't worked for others, I've tried
-Acupunture
-Every supplement(NAC,B12 etc)
-Sound therapy(made things worse)
-Saffron
-Various meds(Not Trobalt or anti-convilsants)
-TEMS devices and electric pulse therapies
-Chi-Kung
-LLLT(2 month trial,zero benefit but there's factors at play there that need consideration
-Cranial therapy
-Massage therapy
-Chiropractic adjustments
-Neuro feedback
-CBT
-Spirit healers
-Faith healers
-Counselling
-Various diets

The list goes on and on and none of it has come close to improving me, the problem is in my ear so that's where I need to get to however that may be.
So now I'm onto the next leg of my journey and if it works everyone here will be the first to know, if not well that's another bust for me but at least I tried.

I can't do nothing at this point, I ended up with severe H in March last year, I could manage and still be somewhat happy albeit limited in what I could do.Life was still open to me to a degree but when I worsened again in December all that dissappeared along with it, my quality of life vanished and hasn't returned.Remember, my quality of life before my worsening in December consisted of being able to talk to my family and friends,watch documentaries and play video games, go for walks and maybe drive to my village for groceries once and awhile or go to a nice quiet hotel with my girlfriend for nights away.If I was really lucky I could go to the mall with Peltors and earplugs in.
That was literally it, and now it's gone for simply having to go to the dentist.

My life consists of getting up, smoking, walking 30 seconds to my nans for a cup of tea and then getting back into bed again in pain and probably worse than when I got up.

 

[InfiniteLoop]

* there are a number of promising treatments based on entirely new approaches in the pipeline, a few of which have already shown positive effects in human volunteers. I expect that the one technology which I know the most about may become a consumer reality within the next decade. I don't think that any technology will help all tinnitus patients, because I believe tinnitus is a symptom which occurs as a result of a huge and disparate set of underlaying problems.

@linearb. My only problem with that very reasonable statement is that could have been written in 1997, 2007, 2017 and unfortunately likely to be equally reasonable in 2027. Don't get me wrong, I am looking forward to new developments and treatments. A few months ago I was talking to members of the Stanford Inititative to Cure Hearing Loss and they are still far away from something practical that can be tried on humans.
I completely agree about the large number of causes behind T, and in many cases people do not even know really the root cause of their problem.

@addot. I have read the same threads as you, and you should notice that in the case of Trobalt I said that some people have found relief even of the permanent type. My concern comes when you mention lesser treatments like NAC, magnesium, accupunture, ginkgo biloba, etc... that have been shown to be not effective for the vast majority of people. Indeed, you can test by yourself and get to your own conclusion.

@bill 112 . I wish you all the luck with your stem cells treatment. I know that you are really suffering and it will be great that you get healed. We will keep an eye on your progress.

 

[linearb]

@linearb. My only problem with that very reasonable statement is that could have been written in 1997, 2007, 2017 and unfortunately likely to be equally reasonable in 2027.

Well... I mean, you could have made the same claim about increasing medical understanding, etc -- but actually having products in the pipeline which have been shown to be efficacious for at least some subset of tinnitus patients is a relatively new phenomenon. And, if you'd said "we understand tinnitus better than ever before" in the late 80s, you would have been talking about the Jastreboff model mostly, which is purely theoretical. Now we have all these new ideas which can actually be quantified with imaging studies.

It's certainly possible that none of it goes anywhere useful, but I don't think it's fair to say that we're not in uncharted waters.

Don't get me wrong, I am looking forward to new developments and treatments. A few months ago I was talking to members of the Stanford Inititative to Cure Hearing Loss and they are still far away from something practical that can be tried on humans.

Hearing loss is a somewhat different animal; that is -- if we had great HL treatments that actually restored hearing, maybe that would help tinnitus in some cases. But, the treatments I'm talking about (bimodal stim, VNS, rTRNS, rTMS, etc) are aimed at reducing the symptom, not fixing the underlying hearing loss.

edit: all that said, one of the big reasons that I try to sleep and mediate with earplugs in on a regular basis, is to get used to how my tinnitus sounds with ~25-30db worse hearing, so that if I hit a point where I'm losing my hearing and we still don't have better treatments, at least I'll already be well acclimated to what it sounds like. So, I am certainly not hanging my hat or living my life around the idea that someone in a white coat is going to be able to fix me.

 

[Alue]

@linearb I'm not one to dig up old posts, but didn't you just say it might be 200 years before a cure is found? I know we're talking cure vs treatment, but both seem far off to me. Even if an acceptable treatment were to be found today, it would be ten years minimum before it would hit the market.


I really hope it helps you @bill 112! If I had the extra money, I would give it a shot too. Be sure to let us know how it goes.

 

[linearb]

Even if an acceptable treatment were to be found today, it would be ten years minimum before it would hit the market.

Right; there are multiple things which look like potential acceptable treatments that are already at some point in the human trial pipeline. That's why I don't necessarily think it will take 10 years for one of them to be a commercial thing.

My 200 year comment was about actually fixing tinnitus, as in, convincing the nervous system to regrow whatever things are missing -- and perhaps as or more importantly, convincing the brain to erase tinnitus circuit pathways once they are well established.

 

[bill 112]

@linearb I'm not one to dig up old posts, but didn't you just say it might be 200 years before a cure is found? I know we're talking cure vs treatment, but both seem far off to me. Even if an acceptable treatment were to be found today, it would be ten years minimum before it would hit the market.


I really hope it helps you @bill 112! If I had the extra money, I would give it a shot too. Be sure to let us know how it goes.

Thanks Alue, I've done everything I can to ensure the best possible outcome and I'll be sure to let you and everyone else here know of my results come February.

There's literally nothing else on this planet that can combat this so rather than siv through all the bullshit I'm just going to go straight for the holy grail and see how things go from there.I have also booked a full hearing examination in the Beacon hospital before my departure which consists of an audiogram(0-16,000hz),OAES/DPOAES,LDLs,low pulse ABR(for people with H,audiologist is a H specialist)and speech recognition.

I have another scheduled for 4 months time to compare before and after treatment results,I'm chronic so any improvements of significance will show and won't be natural recovery by any means which I'm sure will be of great interest to many here.I will also take note of any subjective improvements but seeing as these are subjective I will have my audio metric results as proof of its effectiveness/non effectiveness for those concerned.

As for Linearbs comment on 200 years before a cure or effective treatment is available I would have to agree with him hence why I'm off to get Stemcells pumped through my body
I'm 24 and I don't see a widely available SC treatment or any treatment becoming available to the masses or myself before I'm 40 or even 50 for that matter.

As a good friend once told me, "there's no point putting your sword down in the hopes the cavalry will arrive only to realise they've never departed"

I always took this as there's no point in waiting for western medicine to come up with a cure only to realise on my deathbed that it was never coming.

By then it's already too late so why not do what I can now to improve my life?
That's the way I look at things, I'm not after a cure by any means, I'm not that delusional about what I'm about to do but a noticeable improvement to where I could function semi normally again is worth all the money in the world to me, if the treatment kills me then so be it, I have nothing to lose but much to gain at this point.

 

[Alue]

Right; there are multiple things which look like potential acceptable treatments that are already at some point in the human trial pipeline. That's why I don't necessarily think it will take 10 years for one of them to be a commercial thing.

My 200 year comment was about actually fixing tinnitus, as in, convincing the nervous system to regrow whatever things are missing -- and perhaps as or more importantly, convincing the brain to erase tinnitus circuit pathways once they are well established.

You're talking about synaptic plasticity?

 

[Lorac]

If the planet exists long enough, they will probably learn how to regrow, replace, or repair any thing that breaks on the human body and people will live forever.

 

[linearb]

You're talking about synaptic plasticity?

yes, most of the non-drug treatments I'm aware of which aren't complete scams like LLLT, are based on some kind of plasticity principle. You have "top down" approaches like VNS and DBI where they see an effect but don't exactly know why, then you have "top up" approaches like the bimodal stim device from U Michigan, where they discovered a particular cellular mechanism by which they believe tinnitus is modulated, "proved" it in animals and are now attempting to prove the same thing in humans. Having used their device, I believe they are on to something, but the proof is in the pudding...

 

[bill 112]

Brain plasticity is basically the brain adapting to a loss of input or am
I mistaken?Thats how I always seen brain plasticity, it's basically the brain adapting to an injury and reorganising itself to make up for the loss?

 

[linearb]

Brain plasticity is basically the brain adapting to a loss of input or am
I mistaken?Thats how I always seen brain plasticity, it's basically the brain adapting to an injury and reorganising itself to make up for the loss?

it is a general term which refers to any changes or reorganization in the brain, good or bad. It may be too general to be specifically useful; for instance, since we know that medium to long term meditation causes structural brain changes which may be specifically useful for handling tinnitus, we could refer to meditation as a "plasticity treatment" -- but most people here would scoff at calling meditation a "treatment" for this condition. (Personally, I would not, but we all have our own experience of life and get biased by it...)

 

[bill 112]

it is a general term which refers to any changes or reorganization in the brain, good or bad. It may be too general to be specifically useful; for instance, since we know that medium to long term meditation causes structural brain changes which may be specifically useful for handling tinnitus, we could refer to meditation as a "plasticity treatment" -- but most people here would scoff at calling meditation a "treatment" for this condition. (Personally, I would not, but we all have our own experience of life and get biased by it...)

I wouldn't discount meditation, I mean it did apparently cure Kevin Barry of T and H so much so that he can now attend concerts again plug free.(Speak about tempting faith)
It's something I've looked into but haven't actively pursued, mainly if I'm honest as a result of not fully believing I would see any benefit so maybe I was just biased or discounted the whole concept too early.

I might look into some more in the mean time, I mean Kevin doesn't live too far from me so it may be an option.

 

[linearb]

I wouldn't discount meditation, I mean it did apparently cure Kevin Barry of T and H so much so that he can now attend concerts again plug free.(Speak about tempting faith)
It's something I've looked into but haven't actively pursued, mainly if I'm honest as a result of not fully believing I would see any benefit so maybe I was just biased or discounted the whole concept too early.

I might look into some more in the mean time, I mean Kevin doesn't live too far from me so it may be an option.

I'd just try to put 15-30 mins a day in for free first, assuming Kevin charges for the consult

If you can really stick to 30 mins a day for ~3-6 months I'd be surprised if you didn't notice some positive changes in your mind / life -- but doing that is hard. I was really good about it for a while when I was in a state of real distress; these days my life has been pretty awesome and it can be hard to motivate myself to keep up with it. It's really important, though.