Effect of time ...

[Dr. Nagler]

Hello All -

As I have been going through the various threads on Tinnitus Talk, I see that one particular theme arises fairly frequently: If you are suffering from tinnitus, you need to give it some time. And that advice makes good sense - since over time tinnitus seems to settle down for some ... or they habituate ... or they find a way to cope ... or some combination thereof.

But that is not always the case.

Below is a post from another thread written by @Susan1103 as she graciously welcomed @Dr. Gans to the board:

"I too am new to this site and Im already learning quite a bit. Ive been suffering with tinnitus for nearly 25 years, and progressively getting worse. I really look forward to you sharing any knowledge you have on coping with this disorder. So many people need help!"

So here is my question. What advice does one give to a person for whom the situation has not improved over time?

Stephen Nagler

 

[Hudson]

Hello All -

As I have been going through the various threads on Tinnitus Talk, I see that one particular theme arises fairly frequently: If you are suffering from tinnitus, you need to give it some time. And that advice makes good sense - since over time tinnitus seems to settle down for some ... or they habituate ... or they find a way to cope ... or some combination thereof.

But that is not always the case.

Below is a post from another thread written by @Susan1103 as she graciously welcomed @Dr. Gans to the board:

"I too am new to this site and Im already learning quite a bit. Ive been suffering with tinnitus for nearly 25 years, and progressively getting worse. I really look forward to you sharing any knowledge you have on coping with this disorder. So many people need help!"

So here is my question. What advice does one give to a person for whom the situation has not improved over time?

Stephen Nagler

That's a difficult idea. I would suppose that her tinnitus progressively getting worse has in large part contributed to her lack of "habituation" to it. A person can habituate to a noise, but it's much more difficult to habituate to it if it is getting worse. That's the hard part I have with it. Accepting the idea that it will get progressively worse for me is a huge hurdle to overcome.

 

[Dr. Nagler]

That's a difficult idea. I would suppose that her tinnitus progressively getting worse has in large part contributed to her lack of "habituation" to it. A person can habituate to a noise, but it's much more difficult to habituate to it if it is getting worse. That's the hard part I have with it. Accepting the idea that it will get progressively worse for me is a huge hurdle to overcome.

I understand what you are saying, @Hudson, and on the surface it makes very good sense. But I must respectfully disagree. Habituation to tinnitus is 100% about reaction. It really doesn't have a lot with the psychoacoustical characteristics (loudness, pitch, timbre, etc.) of the tinnitus itself, save for the fact that it may be tougher for those with louder tinnitus. And it really doesn't have much to do with accepting the idea that it's going to get worse, or that it's high pitched, or that it's unpredictable, or that it fluctuates, etc. Habituation to any (non-painful) stimulus is a natural process. Remove the barriers to habituation (some of which we consciously control and some of which we do not), and it proceeds regardless of whether or not the tinnitus is getting louder.

As a support board, is all we have to offer @Susan1103 (and those in the same boat) acknowledgement that it's difficult? They already know that, right? It's been difficult for @Susan1103 for more than two decades!

Something to think about, anyway.

Stephen

 

[cullenbohannon]

First please forgive the grammar and structure. I am writing on my blackberry in the dark. Maybe this will make some sense to someone. I don't have the knowledge,experience or expertise regarding t to give a good answer for the question you posed. But I do have
experiences regarding accomplishing
difficult goals and I use these experiences for my t journey and a for a lot of these things certain steps seem universal. These
goals and other obstacles include
academic,athletics, family tragedy, and an
extreme depression I had for 10 plus years. year's
Time is useful but only when it's used correctly. For me persistence, a positive outlook and finding the right tools and
strategy , learning from setbacks and
understanding they are just "setbacks " were all key in these other parts of my life.
Whatever goals I had or thing I was trying to accomplish there was someone
somewhere who already did it. So I would find out what that did. See what techniques they used that worked for me. When I had
setbacks I had to learn that it's better to look at what progress I made and why it did not work. And go from there. A change in attitude. It took me a long time to get over my dperresiion because I was doing things that were not working. This is when
I learned strategy was key. Today I'm able
to see the positive in everything. I don't think people realize how much being negative and not believing things will get better will affect them. Your brain gets used to a certain way of thinking which is negative. You will have a difficult time
getting through this with this distorted
perception. Don't let yourself get to that point because it's incredibly hard to get out of. that's a lot of rambling for anyone who takes the time to read this but. Once I realized these things. Strategy, find people who have done what you have done and analyze what they did. Have clearly defined goals, have a positive outlook and don't feel bad for yourself because no one else will do it for you. Be persistent, learn from mistakes and setbacks understand what you did wrong and what you have to tweak to get closer to your goal.

 

[Dr. Nagler]

Time is useful but only when it's used correctly.

Thank you!!!

Excellent post.

That's where our collective experience can make a difference!

Stephen

 

[Susan1103]

What does " habituate to it" mean. Does it mean to get used to it, or being able to ignore it?
Although Ive had T for quite a long time, it never really used to bother me much for the most part. It was always pretty dull and I never noticed it much unless I was in a very quiet space. Over the past few years it has become very high pitched and sometimes very loud. Ive been told this goes hand in hand with hearing loss, which I have. I had to resort to hearing aids about 5 years ago. This is when I really began to notice a change in the pitch and volume. I have to wonder if the amplified sound threw my hearing aids are actually causing my T to get worse....

 

[cullenbohannon]

Susan what I gather is that habituation is when you get to a point where t no longer affects your life. Your brain no longer responds to it in anyway so regardless of what your t is doing, your emotions, descions, and quality or life are unaffected
by it. Your t is not good or bad it's just there and you can focus on other things and push the t to the back of your mind. I'm sure Dr.Nagler will explain it better than me. But from seeing your other posts I think your in a good place. It seems like your looking into different ways to over coming it after your t increased. And from the tone of your messages it seems your confident and optimistic that you will as well. Goodluck!

What does " habituate to it" mean. Does it mean to get used to it, or being able to ignore it?
Although Ive had T for quite a long time, it never really used to bother me much for the most part. It was always pretty dull and I never noticed it much unless I was in a very quiet space. Over the past few years it has become very high pitched and sometimes very loud. Ive been told this goes hand in hand with hearing loss, which I have. I had to resort to hearing aids about 5 years ago. This is when I really began to notice a change in the pitch and volume. I have to wonder if the amplified sound threw my hearing aids are actually causing my T to get worse....

 

[Dr. Nagler]

Susan what I gather is that habituation is when you get to a point where t no longer affects your life. Your brain no longer responds to it in anyway so regardless of what your t is doing, your emotions, descions, and quality or life are unaffected by it. Your t is not good or bad it's just there and you can focus on other things and push the t to the back of your mind. I'm sure Dr.Nagler will explain it better than me.

@cullenbohannon, I can't explain it better than that. Nobody can explain it better than that.

I would only clarify that when your brain no longer responds to your tinnitus. you really don't have to push it to the back of your mind ... because you just don't care.

Stephen Nagler

 

[Grace]

@cullenbohannon, I can't explain it better than that. Nobody can explain it better than that.

I would only clarify that when your brain no longer responds to your tinnitus. you really don't have to push it to the back of your mind ... because you just don't care.

Stephen Nagler

Hey Dr. Nagler, your responses really give me hope for the future because you have T and it doesnt seem to effect your life in any way! More of a personal question but have you ever had to be on any anxiety meds to help with the anixety of T maybe in the beginning? And another question would be in your everyday life do you just go about your time and not worry about the sounds worrsening your T or say in restaurants or bars that are a bit loud say 95 db would you reccomend ear protection? Only cause since i have had T in november 2013 my T is still as mild as it was then and has not changed ( just my anxiety and fears with it) and i once a week go out to a loud bar/restaurant where its not crazy loud but probably in the 90's db range and have not wore ear protection cause i feel like im okay. I got T from prob 115-130 db of loud instruments for 40 mins and none the less would figure anyone would in that condition but everyday sounds for example like bars and loud restaurants never made my ears ring before just playing drums/guitar without protection for a long period of time. So basically long story short do you think in bars/restaurants where i described should be okay without ear protection if i take breaks here and there which i do cause i smoke ( which i know isnt good either) or should i just plug my ears up with some 20 db reduction earplugs to play it more safe? I know its a hard question to answer cause everyones different with how sensitive there ears are but any advice would be appreciated! thanks!

 

[Magpie]

"I too am new to this site and Im already learning quite a bit. Ive been suffering with tinnitus for nearly 25 years, and progressively getting worse. I really look forward to you sharing any knowledge you have on coping with this disorder. So many people need help!"

So here is my question. What advice does one give to a person for whom the situation has not improved over time?

I would say that somebody who has been suffering with tinnitus for 25 years needs professional help and any general advice given on any support board/forum is unlikely to help in the slightest. I would compare it to somebody who has suffered with depression asking for general advice. It is unlikely that they can be helped unless the advice is given by a professional who knows the specific circumstances and can work with the person on a one on one basis.

What does " habituate to it" mean. Does it mean to get used to it, or being able to ignore it?

Whilst the general concept of habituation can be defined in the case of tinnitus peoples experiences are different. Sure we all would like to get to the point where we don't even care that we have tinnitus and we are seldom aware of it but that is not exactly how it pans out for many if not the majority. The end point as far as I can see it and from reading a large number of posts is that the end point is where people are no longer distressed about their tinnitus.

 

[Beth]

Magpie, I agree with your post, that the best we can hope for is to no longer be distressed about it. My therapist says CBT and mindfulness are great and I am trying to get a thread going about that (see my MBTSR post) but nobody seems interested! I'm amazed that when we have two such great professionals on the site (Dr Nagler and Dr Gans) with all their knowledge that people don't want as much info as possible. Surely it would help so many people on here. I didn't get any replies so maybe I'm the only one interested...........

 

[Dr. Nagler]

Magpie, I agree with your post, that the best we can hope for is to no longer be distressed about it. My therapist says CBT and mindfulness are great and I am trying to get a thread going about that (see my MBTSR post) but nobody seems interested! I'm amazed that when we have two such great professionals on the site (Dr Nagler and Dr Gans) with all their knowledge that people don't want as much info as possible. Surely it would help so many people on here. I didn't get any replies so maybe I'm the only one interested...........

Beth, truly I mean no disrespect - but when you said "I didn't get any replies so maybe I'm the only one interested," you assume first of all that @Dr. Gans saw the MBSTR post you're talking about (I did not!) and second that she has had time to think about your question and formulate a response given her busy schedule and other obligations. I am sure that she is interested; if she weren't interested, she would not be here in the first place! Like you, I'll look forward to reading what she has to say ... when she has the time to say it.

All the best -

stephen

 

[Beth]

Hi Stephen, I'm sorry I didn't make it clearer........I didn't mean for a minute that I was expecting posts from you or Dr Gans. I just meant that I was surprised that other tinnitus sufferers hadn't made a comment on it when the post had been viewed by over 70 people. Mindfulness and CBT type therapies are getting lots of interest and seem to work well for the anxiety that usually affects people distressed by tinnitus so I thought more people would be keen to hear what Dr Gans has to say about it. I appreciate you both have very busy lives and I'm grateful, as I'm sure other TT site users are, that you take the time to help so I apologize for the misunderstanding. Beth.

 

[Dr. Nagler]

@Beth, I am a huge fan of CBT, Mindfulness, and (especially) what @Dr. Gans brings to the table. The problem isn't with these sorts of therapies. The problem is that what tinnitus sufferers really want in their heart of hearts ... is to get rid of their tinnitus, which is something that approaches directed at reaction cannot provide. I fully understand that concept and also understand the initial lack of enthusiasm regarding habituation-based approaches, coping strategies, and the like. It's all a process, no?

Stephen Nagler

 

[Beth]

I agree that most people want to get rid of their tinnitus and that's one reason why I thought there were no replies to the post when it had been viewed by so many. When I first got T I too was desperate to get rid of it but soon realized that to have that hope and only settle for that outcome would mean I'd be stuck with it for a very long time. I'm sure most people who are new to T feel the same so I do sympathize but as the sounds are the perfectly normal sounds of 'us' anyway, how on earth can we get rid of them?! We'd be brain dead if we didn't have sounds of the brain at work so I really don't understand how tinnitus can ever be 'cured' by a pill. It is such a well know fact (or soon becomes well known) by all people who have tinnitus that it is the reaction that keeps it going and if we don't have a negative reaction we don't have a problem and that is what habituation is; not to be bothered at all by it so the drug would have to be one to eliminate negative reactions I suppose. I could do with one of those when my mother-in-law visits.

I'm sure if I've got it wrong someone will let me know. Beth.

 

[Djurov]

Ive got tinnitus after a cold
Often we tend to forget the reason we cought T, we´ve had colds and illnesses without any further sideeffects! But when we suddenly experience different symptoms, we arent able to blame and remember the correct reason!

I for example. Cought a cold, heard watery sound in one ear, that then vanished and was replaced with tinnitus!
So from my research i do believe that i have a small amount of fluid build up in my right ear wich was the reason for the watery sound. This eventuelly subsided as the fluid either thickend/inflamed my inner ear! Shortly after i cought T, wich i felt came from the left ear? Funny enough i have a low buzz on the ear it all started with, but rather a high pitch on the other ear/brain?

So from my peanut sized brain, i do believe that my brain is trying to compensate for the pressure in my right ear! And making my brain over do sounds on my left ear. I experience that sounds are alittle louder now aswell.

Nevertheless besides the tinnitus, ive felt as if ive seen the world through a camara, as if it was alittle surreal "foggy" and that my concentrating/wellbeing has decreased alittle!



My advise is that doctors ofter conclude something that is totally wrong! The ear doctor said it was due to a decrease in hearing that i had T, but i dont accept that since i dont listen to loud music or concerts!!! By reading and researching im going to conclude that I will "bonbon" on the T and that rather suffer from labyrinthitis

 

[Djurov]

But yes, over the past 3month i have kinda forgotten the sound of T. I do believe that anxiety plays a major role here, as adrenaline and noradrenalin is released and makes us concentrate to avoid damage/threat!

Since tinnitus is some we cant escape from, anxiety builds up and the sound is amplified! Look at it as a dangeraus situation, some one fighting you! Your suddenly aware, and able to see/hear/react different because its a can cause damage! And wham you just avoided a punch that came with 500miles an hour

Likewise if anxcious about tinnitus, the sound will be amplified as we´re afraid! problem is that the brain is concentrated on the sound, and makes T worse! Try to dodge T, and i think it will lessen after the fight is over.

 

[cullenbohannon]

I too had it develop after a cold. I believe the fluid in the ear could travel to the inner ear and cause damage to the hair cells. Not saying this happened to you but it is possible. Are you still seeing things foggy or surreal? @Djurov

 

[Djurov]

I too had it develop after a cold. I believe the fluid in the ear could travel to the inner ear and cause damage to the hair cells. Not saying this happened to you but it is possible. Are you still seeing things foggy or surreal? @Djurov

In the beginning i was really confused and had this abnormal vision, allthough my vision tests came out perfect and even seeing better then the average person. Yet, i still experience this foggd brain vision... but it is has become better, im also able to concentrate on things alot better then in the beginning, back then i coudent even read small letters or sit infront of the computer with full brightness on..

Vision
- car lights were sharper and had an aura
- decreased night vision
- decreased overall wellnesss of sight
- computers/iphone had to be on the lowest bightness

Mental
-dizziness feeling
-confusedness
-balance problem "were bad in the start, and passed fast"

Ears
1. watery sound in right ear
2. stopped but tinnitus occourd



These symptoms have almost passed! And the foggyness vision has decreased, i am able to concentrate on peoples eyes again. But still got a bit left... Im able to do stuff again, but still have this wierd sensation to me...
btw. MR came out clear and so did bloods.


I invite people to believe that there is a cure out there, that there is an underlying problem. Thats doctors often swift you aside with a diagnosis that is false! I advice you to research, test and explore what helps you and what you think is going on rather then giving into the hands of a person thats talking with you for 15mins.

I would also like to invite those that interrested in Labyrinthitis and tinnitus, as these two have quite a connection: http://www.labyrinthitis.org.uk/emma.htm
The link actually discribes how i felt my symptoms in the beginning, its eased down now..

 

[Grace]

If you have T from a cold or infection or maybe no reason at all then i believe it could have an underlying cause and be cured with the right advice from doctors who are willing to help but T from noise exposure like me, the underlying cause is Noise and i fucked my ears and theres nothing to do besides take care of your ears.

 

[xmierce]

I too had it develop after a cold. I believe the fluid in the ear could travel to the inner ear and cause damage to the hair cells. Not saying this happened to you but it is possible. Are you still seeing things foggy or surreal? @Djurov

Same thing happened to me in December 2013.. I went on a flight with a cold and on the decent my ears filled with fluid (a lot of it in both ears).. Conductive hearing loss followed then it took 4-5 weeks to clear. It was terrible.. The ringing was loud and I could not hear hardly at a lot. When the e-tubes open I could hear again but the ringing remained. I agree on the theory that the fluid could damage the hair cells..

I had T before this but it was very mild.

 

[cullenbohannon]

Same thing happened to me in December 2013.. I went on a flight with a cold and on the decent my ears filled with fluid (a lot of it in both ears).. Conductive hearing loss followed then it took 4-5 weeks to clear. It was terrible.. The ringing was loud and I could not hear hardly at a lot. When the e-tubes open I could hear again but the ringing remained. I agree on the theory that the fluid could damage the hair cells..

I had T before this but it was very mild.

Yea a lot of people seem to get better after the etubes clear mine for some reason didnt. My doc said that was his best guess as to what happened to me.

 

[MattK]

Time may ultimately help tinnitus sufferers, but I actually don't like telling people to "give it time". I realize that with tinnitus, there is often nothing we can do. But just telling people who are in desperate need of comfort to, "Give it time", quite frankly, is not a helpful answer. There are obviously coping strategies that these people can learn about that will help them handle their tinnitus better... and yes, time will tell whether the tinnitus just spontaneously goes away or, if not, then hopefully they will habituate. But telling someone to "give it time" really just leaves them feeling hopeless, and just tells them that some day, they might feel better.

So in my personal opinion, when someone is in need of help, they should be given some strategies to help them now and throughout their struggle with tinnitus until "time" has helped them.

 

[Dr. Nagler]

So in my personal opinion, when someone is in need of help, they should be given some strategies to help them now and throughout their struggle with tinnitus until "time" has helped them.

Brilliant. And very well stated.

I started this thread to get folks thinking. And @MattK's sentence above is where I had hoped it would lead.

Stephen Nagler

 

[cullenbohannon]

Looking at it now it makes sense. I think when people first get on the board they're looking to be cured and don't want any advice where they have to accept that this may be forever. I've seen people get good advice on this board and throw it back at the person giving the advice. People aren't necessarily thinking straight when they first get to the board. I guess getting over the initial shock takes getting to the realization this thing is here to stay.

Brilliant. And very well stated.

I started this thread to get folks thinking. And @MattK's sentence above is where I had hoped it would lead.

Stephen Nagler

 

[Dr. Nagler]

Looking at it now it makes sense. I think when people first get on the board they're looking to be cured and don't want any advice where they have to accept that this may be forever. I've seen people get good advice on this board and throw it back at the person giving the advice. People aren't necessarily thinking straight when they first get to the board. I guess getting over the initial shock takes getting to the realization this thing is here to stay.

This thing usually is here to stay, but their suffering isn't!

Stephen Nagler

 

[MattK]

Looking at it now it makes sense. I think when people first get on the board they're looking to be cured and don't want any advice where they have to accept that this may be forever. I've seen people get good advice on this board and throw it back at the person giving the advice. People aren't necessarily thinking straight when they first get to the board. I guess getting over the initial shock takes getting to the realization this thing is here to stay.

Yep exactly. When I first got tinnitus, I didn't want to learn to "live with it". I needed to feel hope that this wasn't going to be my new reality for the rest of my life. I didn't want to have to learn how to ignore it, or cope with it, or anything. I wanted it gone, period. And, though I don't have any control on whether it stays or goes, what kept me going is hope. I have shared already that it is my faith that gave me and continues to give me that hope to keep going and eventually that did help me "cope". For some people, it might be something else. They might have to believe that something like Lipo-Flavonoids will help them and hopefully during that time of using them, then they will habituate.... for who knows? My ENT said about half of his patients swears by Lipo-Flavonoids, including a war veteran. But I personally think it is a placebo... but anyway... since everyone's tinnitus could have a different underlying cause, and everyone's body reacts differently to certain things, it certainly couldn't hurt (except maybe financially) to let people try some alternative treatments to see if it would work for them, and if not, that at least gives them a little more hope during the time they are habituating.

 

[Dr. Nagler]

My ENT said about half of his patients swears by Lipo-Flavonoids, including a war veteran. But I personally think it is a placebo... but anyway...since everyone's tinnitus could have a different underlying cause, and everyone's body reacts differently to certain things, it certainly couldn't hurt (except maybe financially) to let people try some alternative treatments to see if it would work for them, and if not, that at least gives them a little more hope during the time they are habituating.

There's that "time" thing again.

And what exactly are they supposed to do during this "time?" Just wait?

Because all the lipoflavinoids and other placebos in the world aren't going to help worth a flip in terms of inducing or facilitating habituation.

In my opinion, anyway.

Stephen

 

[LadyDi]

Same thing happened to me in December 2013.. I went on a flight with a cold and on the decent my ears filled with fluid (a lot of it in both ears).. Conductive hearing loss followed then it took 4-5 weeks to clear. It was terrible.. The ringing was loud and I could not hear hardly at a lot. When the e-tubes open I could hear again but the ringing remained. I agree on the theory that the fluid could damage the hair cells..

I had T before this but it was very mild.

I am lurking but had to respond... this is exactly how I got my tinnitus. Although never had T before. The worst part was my then primary ENT kept insisting I was crazy, that barotrauma could not possibly cause tinnitus. It took me three very hard months, and multiple consultations, to realize he was wrong. I appreciate hearing from others who had the same injury experience.

 

[MattK]

There's that "time" thing again.

And what exactly are they supposed to do during this "time?" Just wait?

Because all the lipoflavinoids and other placebos in the world aren't going to help worth a flip in terms of inducing or facilitating habituation.

In my opinion, anyway.

Stephen

You're right... things like lipo-flavonoids won't help someone habituate (not directly at least), but it may give them "hope" while they are waiting. See, we need hope; either hope that our tinnitus will go away, or hope that we have a fighting chance at doing/taking something to help it, or hope that we will habituate. Hope is about the only thing that stands between a tinnitus sufferer and the extreme decisions. When hope has truly run out, then suddenly those darker thoughts that can enter our mind seem to be the only relief we might have.

As for something like lipo-flavonoids... that is just an example of something that can give them hope. But for someone who is truly having bothersome tinnitus and feels like he is getting pretty close to the edge of his threshhold, what lipo-flavonoids can do is give him 60 days.... that's what the directions says. Sure, it might not be actually doing any good for tinnitus, but the person might agree that he can hold out for 60 days. And in that 60 days, the tinnitus could go away, but if it doesn't, hopefully he would be able to habituate. But also during that 60 days, I would recommend someone work with a therapist or doctor who specializes in tinnitus to help them habituate. I'm sure there are also a lot more things that can be done. But either way, the person can't lose hope that they will get better, one way or another.... especially initially. It's pretty overwhelming to realize that you are now faced with something that may be with you for the duration of your life.