Tinnitus and TINNITUS

Most experts would need you to agree with them for them to vouch for you. And that goes for any discipline. I doubt too many medical doctors would vouch for someone who goes against the grain of the established knowledge-base of medical science, i.e. you must agree with them. That's common sense. There are exceptions of course, but that's the norm for how it works.

When someone sets up a thread where he expects other people to come to him for help, then yes, he is setting himself up as an expert in that area. And he doesn't have a medical degree, and that's my entire point. He made a thread that set himself up as the "go to guy" and this gives people the impression he is an expert. I don't have a problem with this actually. My problem is the double standard.

Fair enough, but you could have easily said just that. You could have just said, "I didn't ask for your advice and I don't want it." And that probably would have ended the entire thing right then and there.

Seems that just throwing everything under the claim, "I call a spade a spade" is just an excuse to be rude and act like you don't know what people are talking about when they call you out for your rudeness.

But here's an example of how you started a reply to h2h:

Now does this honestly not seem rude or angry to you? Not only do you start off with vulgarity (never a good thing to do in a conversation that is meant to be civil), but then you insult him by implying that he is delusional regarding the reality of the world and compare him to a positivity lecturer.

How we communicate goes a long way in how people perceive our mood. If h2h said something to me that I disagree with I could reply with, "Thanks, but I don't agree with your view on that." Or I could reply with, "What!!! How in the world could you think something so wrong?!!!!!" Do you see the difference?

Now, I wasn't going to say anything about your rudeness (which you claim is just calling a spade a spade) originally. But it seems that at least a couple of people have pointed this out to you and you essentially brushed it off as you're just disagreeing or the spade thing. So I felt that I should say something too. But, when several people begin to tell you that you're coming off as rude, then perhaps it's time to re-evaluate the way you write things.

 

Fare enough, I'm not getting into an argument with you, whatever you say, you seem to know everything!

This is a support forum and I'm done with the arguments!

Have a nice day.

Regards Rich

 

People new to tinnitus should learn that things like focus on T, mood, anxiety, panic attacks, etc., contribute to your comfort around your tinnitus. It is a good advice for new victims, and I have gained value from that (and can mostly fall asleep with a non-offensive relation to my tinnitus sound for instance).

But the claim that my tinnitus is not more severe than anyone else’s tinnitus, and that my life sucks because I haven’t learned to ‘react’ properly to it, grinds my gears. This statement seems to always know more about my situation than me, and then I have to justify in detail why this hasn’t cured my situation or sadness. Depending on peoples belief in the ‘reaction religion’, they might sympathize with my situation or not.

I don’t want to compare my tinnitus severity to other tinnitus victims, or draw parallel – I just want people to accept that my situation is hard without putting me in the ‘he hasn’t learned to react properly’-box.

This is especially important, when I am facing the medical industry. There is a product out there called AM-101 (as you of course know) that I would pay my soul to take part in. Despite my countless of all kind of attempts to get there since I heard about the trial from Markku, I have not gotten there. Why? First of all because of (rather ridiculous) legal terms, but secondly because doctors won’t accept, that my life sucks because of their ‘reaction religion’. They put me in the ‘learn to react properly’-box as soon as I enter the door with the AM-101 sheet in hand, so there is no need to make a bigger situation out of my life.

I don’t want it to revolve around my situation or life, but I want the truth to be visible to the world. Severe tinnitus is a devastating symptom.

And though it is a true statement to say that there exists a group of two persons in this world, such that one of the persons in this group has a high volume of T and is not bothered by it, and the other person has a mild volume of T and is very bothered by it, then I’m still not a member of the ‘tinnitus volume has no impact on life quality’-church. There is a relation between tinnitus severity/volume and life quality!

To some extend this 'reaction thing' is all just religous gospel. And gospel is often sought out be people in rough situations, who cannot take reality anymore. They have to find comfort elsewhere, and they might continue on living in this reality shift. And though it helps people (depending on how you define help), it should not be accepted as reality. It will simply hurt the tinnitus community.

As an example I have lost my career, because I cannot gather my focus. I have learned to get along by lowering life expectations and dreams. So I have reacted - it was simply necessary. But the difference between me and the 'reaction religion' is now, that I still admit having lost life quality. I don't want this reaction, and I only chose it for survival!

I’m sorry for making a rather uncomfortable post here, but tinnitustalk is my chance to get some frustrations and opinions out. It is by no means a personal attack on @Dr. Nagler – it is rather a nice opportunity to share my thoughts, and it helps me in dealing with my situation.

 

Those who have tolerable ringing in their ears that is in their ears that is not perceivable except in quiet is the utmost mild tinnitus. A lot of us here are the 10% that deal with very intrusive and disruptively loud tinnitus that affects our daily conversations, sexual life, and recreational lives. Don't try to paint it as some pretty picture for everyone, please.

 

@Mal, I understand and respect your opinion on this very "hot-button" issue. Moreover I understand and respect your frustration.

I would make only one observation. I don't know how things work in Denmark, but here in the US it's not so much that doctors have a "reaction religion." Rather, in the US doctors are so totally clueless about the extent to which intrusive tinnitus can affect a person's life that the issue of why it might be so never even enters their minds. There is so much work to be done on so many levels.

stephen nagler

 

I totally agree with you.

There is nothing at all pretty about intrusive tinnitus. If my post suggested otherwise, I sincerely apologize. I am interested in exploring the nature of tinnitus intrusiveness and what, if anything, can be done about it. I myself have experienced intrusive tinnitus "up close and personal" ... and it is one of the ugliest and most vexing conditions I have ever encountered.

stephen nagler

 

I am not attempting to vilify you, Dr. Nagler. I am simply saying that your opening statements might mislead others into believing that everyone experience the same level of tinnitus. I am more than grateful for your contribution to the forum, but I feel obligated to say my peace when it might confuse those who are looking for answers.

 

I appreciate your opinion and clarification in the above regard. I absolutely do not believe that everybody experiences the same level of tinnitus. Perhaps I should have worded my initial post differently or better still not started the thread at all. My message is that regardless of the level of tinnitus, there is precious little that can be done about it at this point in time - so strictly from a practical standpoint it might help to look at the factors involved in tinnitus intrusiveness instead. And the level of tinnitus is but one of those factors. I have never been part of the "loudness does not count" camp.

I am going to drop out of this thread with sincere apologies to anybody who might have been offended by anything I have said here.

stephen nagler

 

Your opinions are very much valued by others here, Dr. Nagler. I don't feel that retreating will do you much good. I am simply saying that you would have done better in your initial statements, is all. I mean no disrespect, nor do I mean to be controversial. I am simply stating that some people might perceive your statements differently.

 

Thanks for your response.

I think it's more or less the same situation in Denmark. In the end, they cannot perform miracles, and they don't have any general sympathy or empathy with you as a patient. They are heavily governed by a ruleset, which in the case of tinnitus says: "go home and rest. It will get better in time". If you still have a pulse, when you exit the door, they have succesfully carried out their job.

It might be a good idea to revise this ruleset (and I have seen suggestions for such on this board).

 

Something, I don't understand. Why to drop out? (did not you start this thread?)
Your responses are so valuable. Your support means so much.
I understand that some members are more direct then others , but your presence here is very important.

I see a pattern that you have a tendency to drop out when things gets complicated.
Your writing style and your responses are very professional so why not to continue regardless what others say?

 

I guess, many can share your frustation. And after one year with intrusive T, I need to say the ENTs are right when they say: "Learn to live with it." In fact, you can better say: "Live with it."

Besides that the only treatment the T medical community has is: "Do not react to it."

Anything else like masking, distraction, psychological help, CBT, TRT and so on are ways to cope reaching a state where you live with it and not react to it. This is unfortunately the sad truth.

I could be wrong, but this is my reality. And maybe accepting this reality is a step into the right direction. But I don't know.

 

You are welcome.

Well, you've got one thing in Denmark that I only wish we had here in the US. And that is Anne-Mette Mohr. Anne-Mette is a Copenhagen psychologist who has devoted her life's work to addressing the needs of those suffering from auditory disorders, especially tinnitus. Not only is she sympathetic and empathetic, but she is also extraordinarily knowledgeable ... and quite possibly one of the very nicest people in the entire world. So perhaps you are not quite as bad off in Denmark as you might think!

stephen nagler

 

Thank you for your kind words.

I'd like to think you are right - but apparently there are a number of folks who disagree with you.

Again, there are those who disagree. And their feelings should be respected as well.

I suggest that you take it up with the administrators off the board in PM or e-mail. But I need to back out of this thread and will no longer be addressing controversial or inflammatory issues.

Best to all -

stephen nagler

 

Okay, now the world suddenly feels very small. I know her from House of Hearing, where I have been 2 or 3 times for group therapy/lectures, and that place was a huge help, when I initially had my noise trauma. It is amazing that this organisation, which introduced me to my new condition far better than the official health system, had to be found using google. And it is not being funded by the public sector.

Thanks a lot for your dialogue and empathy. I hope that I have not contributed to your decision of backing out of this thread, since that is the last thing I wanted.

Kind regards

 

The House of Hearing is truly an extraordinary place - and most of the credit goes to Anne-Mette, although she's far too humble to admit it.

Anne also has a private practice in Copenhagen totally separate from the House of Hearing. She is an incredible resource.

The decision - more of a compromise actually - has nothing to do with you, Mal. I have a long history on tinnitus boards and tend to cause some degree of uneasiness where I post because I am opinionated, I do not mince words, and (as a member of the medical community, a community that has let down a goodly number of tinnitus sufferers) I am an easy target. The administrators here want this board to sort of be an oasis, a place of comfort - and I can appreciate that. So in the interest of maintaining peace in the house I have agreed not to get involved in controversial or potentially inflammatory discussions - and clearly the nature of tinnitus intrusiveness, which is basically what this thread is about, is in some minds controversial. If folks are looking for my input on hot-button topics, the place to ask would be on my Doctors' Corner forum (where there is no back-and-forth debate) rather than on one of the open forums. Seems to me to be a reasonable compromise.

Best to all -

stephen nagler

 

You are not wrong, and I can say, that I agree with you. I think that all of us T victims understand what we say to each other to a great degree, but it might spark some frustrations now and then. We only have words to use as communication after all. The following advise is very true, and I appreciate when people gives it to me in the trust, that it will help me:

Pragmatic individual advise: "Learn to live with it. This is your reality now, so get the best out of it."

I am following this advise, and I have gained value from it.

But I still want the fight for bending this reality to go on. Both on a personal and on an international level. Knowing that this battle continues means something for me, because I realise the enourmous value of it (in case of any positive outcome). I'm going to call this the "reality battle".

The unfortunate part now seems to be, that I have to give up on the reality battle in order to really understand and benefit from the pragmatic indivual advise. Like a monk has to give up on reality to reach nirvana.

I'm afraid of doing that, simply. And I'm afraid that the pragmatic individual advise reaches audiences that were not supposed to have this specifically aimed advice, so that this treatment ends up as the accepted future treatment and demotivates the reality battle from going on.

I have experienced people having mistrust in me, when I claim, that I have been following the advise. Both from doctors and my private sphere. They mean me no harm, but it frustrates me, because I have to justify the amount of psychologists, maskers, etc., that I have attempted, and I have to justify my qualities in life, before I gain more trust.
As my mentioned example with my doctor visit: With my war boots on I went there with the desperate but specific aim of seeking a treatment with the AM-101. This failed, but instead of the doctor saying:

"No, I am sorry. I cannot do this, because A,B..",

she said

"You shouldn't focus on this. Have you tried maskers? TRT? I know a great psychologist!".

I cannot blame her, but it was hard to convince her, that I was already so many steps ahead.

I didn't mean to go wall-of-text mode, so here is a summary:
Let the reality battle continue on, and let the pragmatic individual advise be followed. Living in parallel, respecting each others existence.

 

As I understand it, then House of Hearing is also voluntary work for the people running it. I know that a set of them have private practices in psychology.

I was there about around 1,5 years ago. It resides in a "quiet" place in Frederiksberg, and I used to work close to that location.

Ok, that makes sense. Thanks for the clarification.

 

I hope this does not rehash anything but as far as @here2help is someone that helped me greatly. I see people go to doctor after doctor, and complain because they don't know enough about tinnitus. So here2help is not a medical doctor, i would suspect most of us haven't had much help from our doctors in the first place.

In highschool for soccer i studied what professional soccers players would do to get ready for their own season. The workouts, diets, drills, and even what shoes they would wear.

Studying for law school, i went to my school and found people who are practicing lawyers and those who got into the schools i want to go to, and looked up tips online of what people who are where i want to be did to get there.

When i would work out i looked up what people who had the body types i wanted and learned what they did.

Being a doctor is not what makes one an expert or knowledgeable about T. What maed here2help someone to go to for help and advice is that he overcame is own T and pretty serious H. He knows as much about tinnitus as anyone i have ever seen.

Im not looking to change anyones opinion on here but anyone who comes across this, i would not disregard the advice here2help has given so quickly, if your trying to achieve something the best way iv e ever found to accomplish it is through finding how people before me have done it and to steal from @Dr. Nagler
Strategy, Determination, Flexibility, and Insight.

 

Mine is loud 24/I would call severe,I pray for a day when I can have it take a backseat in my life.
Thanks for the thread.

 

You are so right. I'd still be living my 'old' life if it were possible but I had to give up those things that I enjoyed before but can't do now. Yeah, it sucks big time and sometimes I'm ok with my new life, other times I just want to scream and give up.

 

@April (and everybody else), yes it sucks big time having to give up things you loved to do. I don't know a single person who hasn't had that experience of feeling ok with it after a while but then some days wanting to just "scream and give up", as you write. It's part of the experience of redefining "normal" for yourself, which you have to do every time some chronic condition comes along and screws you. Over the years I've had to give up so many parts of myself that I thought were essential to who I was, that often I've felt like the Black Knight in Monty Python's Holy Grail movie. In case there's anyone who doesn't know this famous darkly comic scene, here it is:

Monty Python-The Black Knight

Gradually I've learned that no matter how much I liked those other versions of myself, this present one is still me, and still worthy of my love and care. We must continue to reinvent ourselves, and keep fighting on.

 

@Della That's clip is pretty funny. Thanks for posting it. I think that is a great attitude. I just spent the week-end with friends in a condo on the coast of California. I usually don't put myself in social situations like that because it is just so stressful with participating in conversations. With T, HL, and H it nearly impossible to have any conversation unless the persons is sitting right next to me so I can read their lips. If they turn their head, or another person joins in the conversation I can't decipher the words. But I'm glad I went and am trying not to think about how stressful it was. It was good to be around people but am really glad to be back in the quiet of my home.

 

@April, good for you for giving it a try! I remember when I started again going to restaurants with friends ... it was exhausting, and I often just had to sit and smile, because I couldn't decipher the conversations. At first it was really frustrating, but at the same time I was glad to see my friends, and to know that they had missed me (I laid low for a pretty long time). I was very open about what I couldn't hear -- not in an unpleasant way, just factual -- and gradually they started adapting to me: choosing quieter places, being sure they faced me when they spoke, not all talking at once, etc. And when they'd forget and I'd be lost, I learned to just relax into it and watch them being happy, and enjoy that. If someone invited me out and I didn't feel up to it, I'd just tell them and say maybe next time. That contact with friends is important, and very gradually it will get easier.

I'm glad you liked the clip! Hang in there ...

 

Pardon my French, but I bloody love the French in that movie.

French Taunter - Monty Python and the Holy Grail

 

@Vaba I don't know how that movie got past me. Now after seeing both those clips I'm going to watch the entire movie . . . .too funny. thanks!

 

@Della Yes, our situation sounds so similar with how we deal with social situations. I would say that my new normal is pretty good. Of course, there are good days and bad days but like you, my friends are very understanding and we still carry on pretty much the same. If we do happen to go out to a restaurant and there is outdoor seating we go there because they know I can hear better. When inside, they also know that I'm ok with sitting there and not being in the conversation. No one makes a big deal out of it anymore and I like that.

 

@April yes you MUST see that whole movie! Laughter is such great medicine.

I got to wondering today if you are aware of the various specialized earplugs that are available now. Those are important tools for me when I have to go into noisy environments, like grocery stores, some restaurants, concerts, movies, etc. I'm a musician, so I wound up getting two sets of custom musicians' earplugs made by my audiologist. That's where they take a mold of your inner ear and design an earplug that fits you exactly, and it lets in certain frequencies but not others. The reason I got two sets is that one has a light filter in it and the other a heavy one. The heavy filter is for rock concerts and such. The brand I got is Westone Tru. They're pricey, but I thought you should know about them. Another option that's MUCH cheaper are the Pacato Music Filters by ACS. They're not custom fit, but they're very comfortable, and like the others they allow you to hear certain frequencies while protecting you from others. I often choose those when I'm in a noisy restaurant with friends ... they let you hear voices while screening out the more painful noises. Sometimes I'll wear one in just one ear, depending on where I'm sitting. It's important to experiment.

 

@Della I had no idea that such earplugs existed . . . .thanks so much for the tip.

 

Because I never wear my hearing aids at home, I forgot that when I'm out with people I have to wear them otherwise I cannot understand anything. That being said, I wouldn't be able to use the custom earplugs in a social situation because of the hearing aids. Darn, thought I was onto something.