Why Are All These Potential Treatments Taking So Long?

@attheedgeofscience Thank you for readily supplying me with the publicly available information. I did give it a quick read, and found what has been done very impressive. I do not sense that you were being difficult at all, and I completely understand that non-public information is on a need to know basis only. I will give this some thought. I enjoyed your Niels Bohr quote. Made my day.

 

The difference between an explanation provided by Prof. Jeanmonod and an ENT is that there is depth to the professor's knowledge.

My friend... no one "throws" anything at me. If they do - doctors or otherwise - they get exposed for what they are on the spot (just like you did in the post further up where you could not even answer two basic questions about HIFU).

Move along.

 

So.. The number of chronic tinnitus patients cured by HIFU is....? And the blinded longitudinal studies which show it works have been published and peer reviewed where, exactly?

 

Why the bickering? We are all in the same leaky boat here . We can have different opinions and still show each other respect , I would think

 

Didn't say they were hiding any cure's.......

That's a great hobby, then you should already know what they know about Tinnitus and what is actually involved in the process then.
I wouldn't say that they know SFA about it otherwise we would not have a drug that is in phase 2 of trials would we?
As far as I can see you don't come up with a drug to treat Tinnitus unless you know a little bit more than SFA about the affliction in the first place!

I think we all know that there is no cure, but to doubt that they don't know too much on the subject is a bit pessimistic and not very logical coming from someone who's hobby is reading all about research on Tinnitus, don't you think? Your words not mine!

 

pompous
1. one whom of which is full of pomp.
2. a self absorbed person.
3. an elitist pig, usually found inflating her/his ego to the point of nausea.
4. a self proclaimed stately person, commonly found talking down to others whom of which are typically in a higher intelligence quotient bracket.


Where did this come from?, and on what do you base this senseless personal attack on?

@attheedgeofscience happens to be one of the most knowledgeable, obliging and caring members of this forum, and I for one object to your baseless attack on his demeanor, before you pass judgment again you might like to research your subject matter,(ateos's numerous factual and well researched post's).

Pompous he certainly is not!

 

If I were you, I'd take a chillpill and lay back for awhile. You've had T such a short time that there is every chance that it will go away in the next 12 months. Your emotions are overpowering your ability think rationally.

One of the problems with the T is that there may be many components accumulating and creating the T. These mechanics are not understood too well. My guess is that we won't be having one treatment which cures T but several combinations of treatments which target different parts of our auditory system (inner ear, auditory cortex, auditory pathway etc.). And that being said - ATEOS didn't have problems with the component that HIFU targets.

 

ATOS has a lot of direct personal experience with a lot of unconventional, experimental or cutting edge therapies, and he's done an amazing job documenting them and put a lot of time into sharing them with us in the hope that they might help other people. That is very commendable.

That said, I agree that he's being a wee bit pompous about it here.

That shouldn't be a big deal. This is the internet. Being pompous on the internet is like being conservative in church.

 

@Zechariah You are so right! There are so many components creating T that there will not be one single treatment that cures it. A differential diagnosis is crucial for figuring this out, but is so often overlooked. People think that ringing in the ears is just ringing in the ears. Because of the limited definition of tinnitus that everyone has come to accept, it keeps us and the medical community from actually finding the cause(s). For example, somatosensory tinnitus is the most under diagnosed form of T out there, yet about 20% of people with tinnitus have this very different type of tinnitus (rather than from strictly hearing loss) that is generated from different sources in the body. When a differential diagnosis is applied, many forms of T have been diminished or eliminated altogether.

 

Just wanted to chime in here and say thank you to @attheedgeofscience for all of his experiences and what he has shared with us all here. He certainly doesn't need to do that and he is excellent at breaking down the facts of the different treatment options, as well as doing behind-the-scenes research. Without him, I doubt I would keep returning to these message boards to see what new insight he has provided. Thanks, ATEOS.

It's easy to dwell in negativity, especially when it comes to tinnitus, as evidenced by all the baseless attacks by some newbs here. We can have differences of opinion but name-calling just brings everybody down.

 

Actually he did. He does NOT want to lose his hearing capability. Probably that's why Prof. Jeanmonod told him no way with HIFU. I, on the other hand, wouldn't mind as long as the T disappears; together with H. Of course, I would mind but if I had to choose between T and being deaf on one ear for life, I'd rather pick deaf, especially since T is getting worse after some years according to some veterans. Or maybe instead of obliterating the auditory cortex a CI could solve T ?

Now, where is my chillpill?

 

And gets much better according to other veterans .

 

Whilst I agree whole heartedly with you I would like to say that from your posts I think that you have mild T in comparison to the intrusive T that some experience. Intrusive T can make a person irritable, short tempered and aggressive and quite alien to the person they were before they were afflicted. Forgive me if I am wrong about the mild T.....You also have your wonderful family and supportive partner for which I am glad for you but please spare a thought for those who are not so fortunate.....just trying to explain why some may be aggressive on this forum - not excusing it but just trying to understand it is all.......

 

It also stays the same or even gets better according to other veterans. Why worry about, let alone expect, worst case scenarios? If your T hasn't improved or worsens in 10 years, you'll still be able to go cannibalize your brain at that point if you want, and the science will be that much further along....

I don't worry about any of that too much, out of the vague murphy's law thought that I might spend my whole life worrying about T getting worse, and then actually end up getting something totally different that's a lot worse. "What could be worse than T?!?!" -- how about having locked in syndrome? Or, even worse, having that on top of T......

 

I don't think it's reasonable, appropriate, or helpful, to assume that people who seem to struggle with things less than oneself does, means that they have a weaker or easier-to-deal with version of the same problem. Everyone is different, responds to things differently, and has different tolerance thresholds. There appear to be people with relatively "mild" T as far as volume, who suffer much more as a result, than other people with louder or less maskable T.

 

It shouldn't matter if someone is new to this forum or has been a member for a long period of time. Calling someone a newb is somewhat degrading. We are all newbs at at something at sometime in our lives. We are all suffering, or have suffered, from this affliction at some point or we wouldn't be here. Some have experienced T to be more debilitating than others. And our T is from a variety of causes, as is evidenced by the variety of threads here. Patience and respect are important when we communicate with each other, even if something is said that makes one of us snap. Understanding and compassion are key here. As Mother Teresa said "My true religion is kindness."

 

@amandine You are so right that aggressive and debilitating T can make a person quite alien to the person they were before they were afflicted. Thanks for your post on this thread.

@linearb Yes. Everyone is different. I have been told time and time again that I have a high pain threshold, having been a marathon runner, high altitude mountaineer, and competitive cyclist. I even competed, unknowingly, with three broken ribs. But my T & H have brought me to my knees! Your point is well-taken.

 

@linearb, no, no I am with @amandine those with a mild T have it much much better. They can listen to music, watch movies, being out and about and the ambient sounds will mask their T unless they enter a silent room. I, on the other hand, cannot do anything. My intrusive T gets louder no matter what sounds there are! Louder as trains man! Get that, louder as freakin trains. 24/7 in the foreground. Insanity is near. And that IS why I do consider suicide. I think when mine was in the background, like I'm told from other T sufferers, I could handle it much better.

To be honest, T +H is already worst case scenarios now! How much worse can it get than this? Pseudocoma? I have had that all the time after sex.^^

 

@amandine I really have no idea if my T is louder or softer than anyone else's nor do I really have any interest in measuring it. I do know that the beginning of my T and the three months that followed it were among the worst months of my life where I was afraid to do a lot of the things I loved to do, even with a family at home. I guess I don't see the point in having a pissing contest over who is suffering the most--we are all suffering and thus why we are all here in the first place. I am currently sitting at a restaurant and my T is there but I am not letting it stop me from enjoying a healthy meal.

 

When someone voices an opinion with little knowledge of the facts on the subject matter then one has a right to refuse to debate with the said person and IMO is not being POMPOUS!

I would have done the same, opinions should not be voiced with little or no knowledge of the subject matter unless it is stated that this is the case from the start, if not, then you have a right to refuse to debate that person.

Resorting to name calling shows one's intelligence or lack of it!

This may be the internet but this is not just another internet forum and there's no room for insults on here!

 

How are you so sure that "mild T" sufferers are easily able to mask their T? I was just walking outside with traffic noise and could still hear mine. The difference is I am a lot happier when I am doing things I enjoy doing. Last night my T was so loud that I couldn't sit and talk with my friends who were over and had to do things like washing dishes to not feel too uncomfortable. That passed and my wife and I went to bed peacefully. Then we woke up with our kid screaming like he was being murdered for an hour with a night terror. We rode it out and I helped calm him down with earplugs and more importantly got through it with grace by remaining calm. What would have inevitably spiraled into a fight with my wife over it turned into us laughing about it and going back to sleep with our new friend, masking noise.

I have seen your posts here and I really feel for your suffering--i know how you feel (and so does everybody else here). I just wanted to share that with you to demonstrate that you don't know what other people experience and that it can get better. I truly hope you feel some ease in your suffering soon!

 

You are right--i shouldn't have used the word newb. I apologize for that.

 

I totally agree, that's more or less what I was stabbing at in the first place -- that, and the idea that insults are still insults even if they are dressed up in five dollar words and college level syntax.

This is exactly why I think that putting time and energy into seeking out and fulfilling volunteer activities helping people with severe mental and physical problems is probably one of the most productive things that people really struggling with their own shit -- including T -- can do.

Your present inability to even conceive that other people have worse problems than your tinnitus, is a pretty clear indicator of the degree to which pain and anxiety are consuming and controlling your thoughts. IT WILL GET BETTER. Even if the T doesn't. I say that because I've read a lot of these forums over the past decades, and it's just not possible for people to maintain the early period of total crazy anxiety, panic and pain indefinitely. It burns out. You will get better, or you will adapt.

Being in a permanent state of paralysis, aware, but unable to communicate, clearly has nothing whatsoever to do with sexual pseudocoma. How can you even make that comparison?

 

@marqualler You apology for using the word newb is very much appreciated. I am sure that most everyone on this forum would have preferred never to have been a newb to T, in particular, and to this Forum, in general. Everone is in different stages with their T, and with their agony or habituation. Yes, Mother Teresa had it right when she said, "My true religion is kindness." Whether dealing with any afflictions or problems in the world. As my brother told me, the prisoners at Guantanamo have nothing on me, after seeing my pain and suffering from T & H.

 

They told me so. That being said, it is not my intention to belittle your condition! I am certainly in no position to judge how much someone suffers, or how bad someone's T actually is. However, your relaxed writing style and optimistic attitude towards T might falsely convey a lower severity of your ailment. Or let me put it this way, you are very good in hiding your wounds. I used to be a master in hiding my emotions.. but that only works so long. And now with this malady.. I'm going insane.

Thank you. I appreciate your kind words. ~hug

 

I hear ya man. I sincerely hope I am not hiding my wounds--one thing my therapist and I worked on when this came down was instead of trying to run away from the pain, to face it head on and then let it go. Easier said than done and I still find myself down the rabbit hole of T now and again, but I try to do my best to feel better. And like I told my bandmates, I sincerely am in a much better place right now than I was a few months ago in terms of anxiety and depression, regardless of whether my T severity has increased or decreased. (For the record--I had an audiologist measure my Tinnitus loudness which came in at 9db on top of my hearing loss--which according to him is about the average for patients who come to the clinic report.) I really think thinking (or in this message board's case, writing) optimistically over and over can help you feel better.

Just know that there are people here who care about you and want to help you! Hang in there!

 

That's interesting. Did you know that they use noise as a torturing tool at Guantanamo Bay? Worse, it even works!

@linearb pseudocoma, it's witten in the wiki link.^^

 

@NiNyu I agree with @marqualler There are people here that care about you and want to help you! Many have experienced the same agony you are experiencing with T & H. I am experiencing it right now! It is the stuff of madness, and one should not be held responsible for one actions (or words) when one is being driven insane. I do truly understand, and I wish you all the best. As I've said before, platitudes don't help when you are in this much pain and agony. I just try to take it one day at a time, one hour at a time, one minute at a time. Did you read what I wrote in my post about Guantanamo above?

 

@NiNyu I see that you did!

 

Just a quick note on H , it seems that Retagabine has helped a lot with that for people, somewhat unexpectedly.