Did You Change Your Hobbies Because of Tinnitus?

[Xorthian]

The honest truth of the matter is that I have not been following the clinical trials all that closely. My entire focus is directed towards what can be done today to bring meaningful lasting relief to tinnitus sufferers from a neurophysiological perspective rather than on what might possibly be accomplished at some yet-to-be-determined point in the future from a pharmacological one.

I strongly support tinnitus research in the hopes that in the future somebody will come up with a way to predictably eliminate the tinnitus signal or at least appreciably mitigate its strength - but the operative word there is future. The folks I see in my clinic suffer terribly today ... and what somebody might develop in 2020, 2025, 2030, 2040, or beyond really isn't going to lessen that patient's burden within the next few months, which as a tinnitus clinician is where all my efforts are directed.

Okay understood - just was curious as you have it for very long and I thought that maybe there was something in similiar stage/promise given that didnt work out and was cancelled. Or even mutliplie solutions. Im talking pills only. For now I'm just going to continue assuming autifony is first to get furthest into development until proven otherwise.

I definitely do agree with you on point that if some people are helped with TRT it's good they can start it today/tommorow even in your clinic instead of just waiting 5-10 or even more (if we are unlucky) years for magical pills.

I guess healthy skepticism - such as yours - is required in medical profession
Thank you for your time to answer my question

 

[walkthroughwalls]

Hi all,

My T started 6 weeks ago. I'm not here to tell you how bad it has been (that's in the introduce Yourself section) but I do consider it intrusive. It's not masked when driving in the car or by any office/street normal background noises, nor by TV/radio/nature sounds. I'm pretty sure there worse cases but for me it destroys my concentration because it's always there unless masking is applied (ear noise generators or headphones).
Being an electronics engineer (mostly doing firmware for RF chips these days) I sit at a computer 8 hours long looking at schematics/RTL and coding. My hobbies have always revolved around tinkering/DIY and generally messing about with electronics/mechatronics projects. Last project was a tricopter and at the same time researching in the field of Control systems.
Unfortunately this has all been put on hold since this nightmare started. I can't even concentrate at work much less have the bandwidth to pursue other projects at home. Just the daily routine of going to work and trying to get some sleep is a battle in itself.
I realize that for some people these hobbies may seem narrow and too technical but it's what I really enjoy doing (apart from playing with my kids, travelling), so I would like to hear from people's experiences in terms of managing T and keeping their "techie" hobbies going (or not/changing, etc...).

Tks,

David

Well... all the right things have already been said by Dr. Nagler, Uniqdzign and LadyDi, so I'll just add that you don't have to 'apologize' for your awesome hobbies
Also, these are not kind of hobbies that you have to give up because of tinnitus. You're not playing in a doom band, driving an old school motorcycle without a muffler or shooting guns. Just keep doing what you do!

Speaking for myself, I don't have any hobbies. Only passions that I pursue with varying amounts of time.

 

[linearb]

You're not playing in a doom band, driving an old school motorcycle without a muffler or shooting guns. Just keep doing what you do!

My relatively new, mufflered bike can hit 111db at full rev Though, I'm going to be selling it and getting a (virtually silent) electric motorcycle within the next year, mainly because I worry about the long term effects of 111db, earplugs or not.

Short pipe crotch rockets can probably exceed 130db, which is just insane.

 

[Richard zurowski]

Hi David. I've had tinnitus for four years now it does get better to manage in time it was very bad times for me when I first got tinnitus so I know how your feeling try to stay focused wish you all the very best.

 

[David Ho]

On a scale of 1-10 how much does tinnitus affect your life?

Also, the same scale but how loud is it?

@Danny Boy Not sure what's the point since it's completely subjective. I'm still working which is good. On the other hand I avoid loud places like the plague so social life has vanished. Exercising like crazy (which is good) so I'm knackered when I reach the bed but still having a lot of problems sleeping (specially when waking up in the night) which affects everything. So objectively and thinking about other possible worse cases, about 6/7 I'd say. It sure has taken the joy and relaxedness of life (for now).
With regards to loudness it's impossible to say really without a proper test. There are sounds that are quoted tipicaly at 75-80 dB that partially mask it and others that do nothing. But then again a shower will mask it fine. To me it's intrusive as hell (as for everyone) given that it's unmaskable in day-to-day situations and it's that grinding/old crt tv/crickets kind of sound. I'm sure people who have a single tone would prefer that though...

 

[David Ho]

Tks @LadyDi it's really all about taking active steps instead of sitting on a chair and ruminating all day. Although in the beginning it's kinda hard to not think "why did my number had to come up on that day?!".

 

[LadyDi]

Gosh, I know that feeling, @David Ho. I used to constantly ask myself, "Why did I get on that airplane when I had that respiratory infection, even though my doc said it was OK?" But in time, I just let it go. There are so many things in life we can't predict or control, it felt good when I finally started looking for ways to help myself. Gave me some sense of being in charge of something. You are new to tinnitus, you'll get there, promise. And you will feel so much better.

 

[Mad maggot]

Seems to me that the earlier in the game you recognize cognitive distortions, the easier it is to challenge them. David is giving his tinnitus more control over his life than it deserves. He doesn't need to change his hobbies at all - and he really enjoys those hobbies.

But in the beginning everyone has a panic and wonders how they will cope. Then you realise in time that this is a new way of life you'll have to get used to. Then he'll see he should try to carry on as normal.

 

[Mad maggot]

The honest truth of the matter is that I have not been following the clinical trials all that closely. My entire focus is directed towards what can be done today to bring meaningful lasting relief to tinnitus sufferers from a neurophysiological perspective rather than on what might possibly be accomplished at some yet-to-be-determined point in the future from a pharmacological one.

I strongly support tinnitus research in the hopes that in the future somebody will come up with a way to predictably eliminate the tinnitus signal or at least appreciably mitigate its strength - but the operative word there is future. The folks I see in my clinic suffer terribly today ... and what somebody might develop in 2020, 2025, 2030, 2040, or beyond really isn't going to lessen that patient's burden within the next few months, which as a tinnitus clinician is where all my efforts are directed.

Please tell meDr Nagler have you ever come across anyone complaining of symptoms like mine? I'm living with this and I cope because I have no choice. But if I could figure out what's causing this I could determine if there is a cure or if there is none, stop wasting time looking!
I have a sporadic noise like a metallic click in my left ear. When it gets fast it's like static. It's loud enough to drown out speech. If that was all it was I'd probably not try so hard to figure out an answer but my real proble,mis this:
When I get the noise in my ear my vision bounces up and down and side to side or twists and leaps all over the place. It makes my head feel like my brain is being thrown about inside my head. (I know it is not). I lose balance and walk like I'm drunk or fall down. When it's a really bad episode I get spinning vertigo. The noise only lasts seconds to a minute usually but it happens frequently. On a bad day I can have only four or five seconds between bursts. On a good day I could have a few hours. When the noise stops everything is fine
I don't know if it's the noise making my eyes shake or my eyes making my ears make the noise! ? Any ideas? I've had three MRI scans, two cat scans and numerous tests by ENT who says he is stumped. This has been going for seven years now.
Thanks for reading.

 

[Telis]

Please tell meDr Nagler have you ever come across anyone complaining of symptoms like mine? I'm living with this and I cope because I have no choice. But if I could figure out what's causing this I could determine if there is a cure or if there is none, stop wasting time looking!
I have a sporadic noise like a metallic click in my left ear. When it gets fast it's like static. It's loud enough to drown out speech. If that was all it was I'd probably not try so hard to figure out an answer but my real proble,mis this:
When I get the noise in my ear my vision bounces up and down and side to side or twists and leaps all over the place. It makes my head feel like my brain is being thrown about inside my head. (I know it is not). I lose balance and walk like I'm drunk or fall down. When it's a really bad episode I get spinning vertigo. The noise only lasts seconds to a minute usually but it happens frequently. On a bad day I can have only four or five seconds between bursts. On a good day I could have a few hours. When the noise stops everything is fine
I don't know if it's the noise making my eyes shake or my eyes making my ears make the noise! ? Any ideas? I've had three MRI scans, two cat scans and numerous tests by ENT who says he is stumped. This has been going for seven years now.
Thanks for reading.

I have read here from the experts many times... if you don't react it's not a problem. Your issues CAN NOT be a problem if you don't react. Stop reacting, no problem

 

[Mad maggot]

I have read here from the experts many times... if you don't react it's not a problem. Your issues CAN NOT be a problem if you don't react. Stop reacting, no problem

It's true! The other day I slipped and fell down the stairs because of the noise in my ear and the jumping vision throwing me off balance. If only I hadn't reacted!m so it's my own fault I broke my neck. However I've learned my lesson and decided at least not to make the same mistake twice so I have refused to react to the broken bone in my neck and I'm managing fairly well by getting my older daughter to walk beside me and hold my head up for me. If someone speaks to me she turns my head toward them so I can answer and moves my arms and legs by cunningly arranged strings. Ni look rather like a thunder bird puppet but I'm not reacting at all. How long do you think it will take for my broken neck to go away?

 

[Telis]

It's true! The other day I slipped and fell down the stairs because of the noise in my ear and the jumping vision throwing me off balance. If only I hadn't reacted!m so it's my own fault I broke my neck. However I've learned my lesson and decided at least not to make the same mistake twice so I have refused to react to the broken bone in my neck and I'm managing fairly well by getting my older daughter to walk beside me and hold my head up for me. If someone speaks to me she turns my head toward them so I can answer and moves my arms and legs by cunningly arranged strings. Ni look rather like a thunder bird puppet but I'm not reacting at all. How long do you think it will take for my broken neck to go away?

I see the issue here, I do. I too have had very bad dizzy vertigo attacks, although I have not broken my neck. I also have crippling pain and noise in my ears that makes me close to shitting my pants all day but the advise I get is that if I don't react to it, it's impossible for you to suffer. If you lay in bed and can't work, you are sick, you are in pain, whatever, you can still be ok, just don't react and you can not suffer. No reaction=no suffering. I've been told this a thousand times here. I've even been sent pictures of people on fire not reacting as a example.

 

[Mad maggot]

I see the issue here, I do. I too have had very bad dizzy vertigo attacks, although I have not broken my neck. I also have crippling pain and noise in my ears that makes me close to shitting my pants all day but the advise I get is that if I don't react to it, it's impossible for you to suffer. If you lay in bed and can't work, you are sick, you are in pain, whatever, you can still be ok, just don't react and you can not suffer. No reaction=no suffering. I've been told this a thousand times here. I've even been sent pictures of people on fire not reacting as a example.

I think that's called being dead.

 

[Mad maggot]

Because neither is indicated in David's case. What he needs at this point is a little time ... and the realization that he can continue to enjoy his hobbies in spite of his tinnitus. Which is the message I was trying to convey earlier.

Oh my dear I believe that was exactly the comment I made first which you appeared to rebuff!

 

[Dr. Nagler]

Please tell meDr Nagler have you ever come across anyone complaining of symptoms like mine?

No. Sorry.

If you have not already done so, I would try to make an appointment with Dr. Brent Gaskin, who is a neuropthalmologist in Auckland, and also with Dr. Grant Searchfield, who is an audiologist specializing in tinnitus in Auckland. Perhaps see if they can put their heads together to figure something out for you.

 

[Dr. Nagler]

Oh my dear I believe that was exactly the comment I made first which you appeared to rebuff!

Oh my dear aren't we being picky? You said give it time; I said give it time and change the way you think about your hobbies. Do you really want to go to the mat over this? I'm sure we both have better things to do.

 

[MattK]

I have read here from the experts many times... if you don't react it's not a problem. Your issues CAN NOT be a problem if you don't react. Stop reacting, no problem

I know you're being facetious, but by definition this is true, no reaction = no suffering. No reaction doesn't mean, "I feel pain but I'm going to ignore it and carry on as if I don't react." Because the moment you feel pain, you've reacted. After all, pain IS a reaction.

If you want to drive the point you want to make, you should be arguing whether it's truly possible not to react.

 

[Mad maggot]

No. Sorry.

If you have not already done so, I would try to make an appointment with Dr. Brent Gaskin, who is a neuropthalmologist in Auckland, and also with Dr. Grant Searchfield, who is an audiologist specializing in tinnitus in Auckland. Perhaps see if they can put their heads together to figure something out for you.

Thank you very much for this suggestion. It is very helpful. How on earth do you know people all the way over here? Hmmmm... Neuropthalmologist! Perhaps I'm looking in the wrong place.... My symptoms started with my vision acting weird for some months before ever I had any symptom I thought was related to my ear. I actually saw an eye specialist first because I thought it was my strabismus playing up. I had surgery on both eyes when I was four so that I could hold my eyes straight with my glasses on. He saw my left eye moving (the only doctor I've seen that actually saw the movement) and said I had superior oblique myokimia. Some time after that I developed the noise in my ear exactly in time with my jumping vision. He then said SOM was not the answer and I needed a neurologist. But when I went to my GP she said the neurologists had washed their hands of me! Her exact words. So she sent me to the ENT.
Your suggestion has me rethinking. Thanks.

 

[Mad maggot]

I know you're being facetious, but by definition this is true, no reaction = no suffering. No reaction doesn't mean, "I feel pain but I'm going to ignore it and carry on as if I don't react." Because the moment you feel pain, you've reacted. After all, pain IS a reaction.

If you want to drive the point you want to make, you should be arguing whether it's truly possible not to react.

I understand. And certainly there is truth in that. I do not react to my problem so in a sense I am not suffering as much as I did in the beginning. But I think people can take this idea too far and be cruel in that it suggests you are somehow responsible for your problem and should harden up. And there is a point where it becomes impossible not to react. Our bodies are designed to react to pain for example to keep us alive. If we ignored pain we'd most likely die.

 

[Dr. Nagler]

Thank you very much for this suggestion. It is very helpful.

You are welcome. Hope it helps.

How on earth do you know people all the way over here?

Grant Searchfield is a good friend and colleague. We met back in 2002 when I was invited to give a tinnitus presentation at the University of Auckland, and we have kept in touch ever since. As far as Dr. Gaskin goes, I do not know him at all. It seemed to me from your visual symptoms that you should be evaluated by a neuro-ophthalmologist, and I found him on a web search for fellowship-trained neuro-ophthalmologists in New Zealand.

 

[snow86]

@Mad maggot
NZ is not that bad place to be when it comes to T. Dr. Dirk de Ridder moved there....

 

[Mad maggot]

You are welcome. Hope it helps.


Grant Searchfield is a good friend and colleague. We met back in 2002 when I was invited to give a tinnitus presentation at the University of Auckland, and we have kept in touch ever since. As far as Dr. Gaskin goes, I do not know him at all. It seemed to me from your visual symptoms that you should be evaluated by a neuro-ophthalmologist, and I found him on a web search for fellowship-trained neuro-ophthalmologists in New Zealand.

Wow!!!!
I emailed Dr search field this morning and got an almost instant reply! He has said if I'm willing to participate in research there would be no cost. As you can imagine I have no more money left to throw at this! I'm so surprised he even had time to read my email.
Thank you again Dr Nagler for your most helpful suggestions and taking the time to even bother.

 

[Dr. Nagler]

Thank you again Dr Nagler for your most helpful suggestions and taking the time to even bother.

Glad to help. I hope it all goes well.

 

[MattK]

I understand. And certainly there is truth in that. I do not react to my problem so in a sense I am not suffering as much as I did in the beginning. But I think people can take this idea too far and be cruel in that it suggests you are somehow responsible for your problem and should harden up. And there is a point where it becomes impossible not to react. Our bodies are designed to react to pain for example to keep us alive. If we ignored pain we'd most likely die.

Suffering itself is a reaction. Hence the reason no reaction means no suffering.

As I've said, poking fun at the concept that no reaction = no suffering is pointless because by definition this is true.

However, what can be argued is whether one can truly not react or have the reaction be minimal enough to where suffering is markedly decreased. That is very debatable.