There Is Much You Can Do for Your Tinnitus and Hyperacusis

[Vicki14]

@Gman

Sorry to hear that you've fallen victim to this hideous procedure too. I can't begin to tell you how horrendous and unprofessional my experience was with this, especially on a psychological level, it's been a horrific journey. My friend @Blue28 has had a similar experience especially with the clarineting! It's shameful how they get away with this and we have absolutely no comeback! My wax removal was unnecessary and an Audiologist afterwards said my ear canal was very dry... it's truly criminal

 

[Vicki14]

So if people like you stopped perpetuating the idea that there will never be a cure, perhaps more people would demand one.

@Autumnly

WELL SAID!!!!! Why did he come onto this forum to kill all our hopes and dreams of some help with this?! We are all suffering desperately enough with this condition without idiots like this who have ABSOLUTELY NO CLUE in what this is like live with spout their unhelpful shit!

 

[Don Tinny]

I have no doubt that some day these studies/research findings will lead to a better understanding and medical treatments for this problem. My point is simply that, generally, it takes a long time before these results are proven, result in new technologies, therapies with practical applications and are approved/accepted and integrated into the standard of care. .

https://www.neuromoddevices.com/company/technology

I do not know what you think about neuromodulation, but they will start selling this device in 2019.

 

[Bam]

@Autumnly

WELL SAID!!!!! Why did he come onto this forum to kill all our hopes and dreams of some help with this?! We are all suffering desperately enough with this condition without idiots like this who have ABSOLUTELY NO CLUE in what this is like live with spout their unhelpful shit!

That clown killed nothing. Don't let his ill informed outdated crap get you down @Vicki14 maybe we can ask @Contrast to do some of his background checks and find out if this guy is even a doctor.

 

[Vicki14]

That clown killed nothing

Thanks @Bam

When you're having a particulary bad day and then you read something like this, it just brings you to your knees. Don't you just detest beholding to such a cruel condition!

 

[Bam]

Thanks @Bam

When you're having a particulary bad day and then you read something like this, it just brings you to your knees. Don't you just detest beholding to such a cruel condition!

I know. We need hope of a cure not more shaming about our emotional state which is bound to be out of whack completely hearing permanent noise in our heads. Sometimes people don't get how until something truly concrete appears on the treatment front we don't need more counselling shit, we just need empathy and to not feel so completely alone in our suffering and misery. And yes, sometimes we need to vent about how this condition makes us feel bloody suicidal.....and that doesn't mean we're weird, or morbid or promoting death. It's just because we're depserately miserable going from the beauty of silence to hearing eeeeeeeeeee on repeat FOREVER!!

 

[Vicki14]

we need to vent about how this condition makes us feel bloody suicidal.

I agree, entirely! I'm sure like most of us on this forum we were happily going about our lives, enjoying things that we just took for granted in life, the simplest of things. To have it all taken from you and replaced by this torture would make anyone severely depressed. I sure as hell didn't have any mental health issues prior to Tinnitus, I could count on 1 hand how many times I visited the doctor and was always proud of my health. We have to vent and be honest with our feelings, if we don't, it'll only cause more suffering and pain. To have those who truly get it helps SO much x

 

[david c]

I am a physical therapist in the Portland, OR area, that has been treating a broad range HENT patients the past decade.

I can tell you from professional and personal experience that there is much yo can do about all forms of tinnitus and hyperacusis. It is a multifactorial problem that can stem from musculoskeletal issues (including: spinal degeneration, disc disease, posture, congenital anatomical anomalies) and psychosocial issues. In most cases it is a combination of many of these factors, but the most influential of which are stress and emotional trauma. If you do not address the role the latter two of these play in your condition, you are bound to experience less than satisfactory results.

Most mainstream clinicians do not appreciate these relationships or are limited by their training to deal with the problem in its full scope.

Consider seeing a manual physical therapist and perhaps a counselor to deal with this problem. You'll be glad you did.

This post is typical of the sort of self-interested post by various types of CBT counsellors/ Physical therapists/ Mindfulness therapists/ Wellbeing "gurus" etc all of whom are keen to get their share of the tinnitus dollar/pound/euro.

A couple of years back when the BTA ran a poll on the areas of research needed in tinnitus studies it invited therapists such as these to make up 50% of the panel who made the final decisions on funding. Unsurprisingly, they ended up allocating most of the funding to yet more "research" on these types of therapies and no money to the real, innovative biomedical research into tinnitus which we actually need.

 

[Bam]

I agree, entirely! I'm sure like most of us on this forum we were happily going about our lives, enjoying things that we just took for granted in life, the simplest of things. To have it all taken from you and replaced by this torture would make anyone severely depressed. I sure as hell didn't have any mental health issues prior to Tinnitus, I could count on 1 hand how many times I visited the doctor and was always proud of my health. We have to vent and be honest with our feelings, if we don't, it'll only cause more suffering and pain. To have those who truly get it helps SO much x

Me neither. I never ever went to the doctor. I had down days and would go for a run or a fitness class. It lifted instantly. I never took pills or dreamt of AD's. I was the guy who made everyone laugh and was always full of plans and dreams for the future. I was not a depressing guy.....Now I'm fucking miserable but I still hide it pretty well cos it's not my true nature. That's why I will not take meds because my real state and brain is happy. In that sense I would rather be dead than treat something I don't have namely depression. I have fucking tinnitus, bad tinnitus and I defy even the last remaining Chuckle brother not to feel bloody depressed with this shit!

 

[InfiniteLoop]

@Dr. J C Miranda:

Do you believe in fairy tales as well? Stress only increases the awareness to the tinnitus perception, it does not cause it. The immense majority of people suffering T are here because of hearing loss issues (obvious and not obvious ones). Have you checked your audiogram up to 16KHz?

 

[TuxedoCat]

That clown killed nothing. Don't let his ill informed outdated crap get you down @Vicki14 maybe we can ask @Contrast to do some of his background checks and find out if this guy is even a doctor.

I Googled him last night and nothing came up. Seems strange, if he were in practice something would have popped up. Keep in mind he's not a physician. He may have a PhD in physical therapy or some other area and he's using the title Doctor.

TC

 

[Vicki14]

Me neither. I never ever went to the doctor. I had down days and would go for a run or a fitness class. It lifted instantly. I never took pills or dreamt of AD's. I was the guy who made everyone laugh and was always full of plans and dreams for the future. I was not a depressing guy.....Now I'm fucking miserable but I still hide it pretty well cos it's not my true nature. That's why I will not take meds because my real state and brain is happy. In that sense I would rather be dead than treat something I don't have namely depression. I have fucking tinnitus, bad tinnitus and I defy even the last remaining Chuckle brother not to feel bloody depressed with this shit!

EXACTLY! I agree too that meds and being in a constant state of agitation isn't for me! I love the gym, I actually felt lifeless on the running machine today as all I could hear was the crazy noise. How can you ever feel good when you feel so rubbish on the inside with no way of fixing it? . So sorry thstvthis condition has ripped your life apart too... x

 

[Bam]

EXACTLY! I agree too that meds and being in a constant state of agitation isn't for me! I love the gym, I actually felt lifeless on the running machine today as all I could hear was the crazy noise. How can you ever feel good when you feel so rubbish on the inside with no way of fixing it? . So sorry thstvthis condition has ripped your life apart too... x

We have to give this neuromod thing a go Vicki. It sucks that we have a condition that has no proper treatment on the health service we pay into but that's all part of the shit we're stuck in. We're just gonna have to fork out AGAIN! And cross everything it works.........Because it's going to be a long old wait for another passing ship on fucking misery island.

 

[Starthrower]

I Googled him last night and nothing came up. Seems strange, if he were in practice something would have popped up. Keep in mind he's not a physician. He may have a PhD in physical therapy or some other area and he's using the title Doctor.

TC

Excellent point @TuxedoCat.

 

[Bam]

I Googled him last night and nothing came up. Seems strange, if he were in practice something would have popped up. Keep in mind he's not a physician. He may have a PhD in physical therapy or some other area and he's using the title Doctor.

TC

He's got a PHD in winding people right up that's for sure!

 

[Contrast]

research that has found that if clarinetting occurs, sound levels can reach 140db.

what?

 

[Starthrower]

He's got a PHD in winding people right up that's for sure!

Yes @Bam. I have had severe tinnitus since 2002 and also have a lot of internet forum experience from back then. The problem is we are so broken many fall prey to this. I did. So called "Drs. and experts" taking advantage of people who are easily taken in.

I remember that I had to learn this on my own rather than listen to others warnings.

 

[TuxedoCat]

He's got a PHD in winding people right up that's for sure!

Definitely. But people were wound up with good reason. He clearly hasn't done any home work.

Anyway, I was just over on Facebook on the Stichting Gaby Olthuis Fond page. Joan von Baarle mentions that she's being interviewed by TT. I hope this interview opens some people's eyes.

TC

 

[Bam]

Definitely. But people were wound up with good reason. He clearly hasn't done any home work.

Anyway, I was just over on Facebook on the Stichting Gaby Olthuis Fond page. Joan von Baarle mentions that she's being interviewed by TT. I hope this interview opens some people's eyes.

TC

The problem is we're just preaching to the converted a lot of the time. Will my family read this interview with Gaby's mum if I send it to them? Maybe. Would they change their view on euthanasia for tinnitus of they did? No. Their attitude is it's better that I go on living in abject misery than disrupt their lives by killing myself. One thing I've learnt from this is even people you think love and care about you are actually utterly selfish in their 'love'. They have your interests at heart as long as it doesn't conflict with their interests and happiness. Luckily this attitude leaves me feeling zero guilt about ending my life and 'hurting' them as I find it sickening that they would happily leave me destitute and suffering tremendously to spare their own misguided conscience. The only being I feel any guilt for leaving is my dog because I can't bear the thought of him wondering where I've gone. And I couldnt kill him if it came to that.

 

[Ecip]

Yes. I am a insurance producer and I am required to complete three annual courses to maintain my credential. The same should be done by doctors.

Now this I can get behind.

 

[Greg Sacramento]

I am a physical therapist in the Portland, OR area, that has been treating a broad range HENT patients the past decade.

https://orthopedic.io/physio-clinic/miranda-physical-therapy-pc-clackamas-or/

A J.C. Miranda is listed as therapist/owner.

I have no idea if he's been able to help someone with physical neck tinnitus or TMJ tinnitus.

TMJ is hard to treat where some of us have posted detailed links where other structures need to be treated as well.
Some of the neck physical areas that mentioned in link when treated successfully as a single area problem has a 12% tinnitus cure rate. Others - 25% - 50% may get some relief per some of the areas mentioned in link.

 

[PaulBe]

My other concern is that epidemiologically these problems are less impactful than say heart disease, cancer, opioid addiction or obesity and therefore less money is appropriated for research into tinnitus and hearing loss.

He's right there. Resource allocation is the biggie in Healthcare. In financial and risk-benefit terms they prefer to keep tinnitus treatment minimalist, non-invasive and managed at GP/community level (if at all). Finding a treatment would be one thing, but making that treatment available, at reasonable cost to multiple people would eat into other areas of the Health budgets and they just don't view that as worthwhile. A pharma treatment that required ongoing dosing might have some attraction, but that's as good as we are likely to get. Were more of us to become a drain on the public purses through sick-leave, disability etc, then things would change, because really, that's about all States care about.

 

[TuxedoCat]

The problem is we're just preaching to the converted a lot of the time.

Hi Bam, I'm thinking more of the general public. Depending on how moving the story is without being overly dramatic and how Joan comes across it could make a deep impression. So far, she seems like a very rational human being.

This is from the website-

"The book Captured in Sound is about Gaby Olthuis, mother of two children, who suffers from an unbearable form of ringing in the ears. When there is no relief after years of struggle, she decides to euthanize. How did she get this far?

Gaby's mother Joan van Baarle describes in her book the long road that her daughter has traveled through medical specialists and alternative healers. Gaby continued to keep hope until the last moment. Because above all she wanted to live."

For me, Captured in Sound is a good title that describes what its like to have chronic tinnitus, because we are in fact being held prisoner to it and there are no workable alternatives for getting rid of the sound.

My son belongs to what is known in the US as the latch key generation. I worked and he learned to be independent at a young age. Likewise, my husband is an independent type. We have common interests and things we did together but also our own unique interests. He can cook as well as I can and enjoys it. If I were to take myself out of this life, I know that those around me would grieve for awhile, but in the long run they would be fine because life goes on and they are equipped to handle it.

Which brings up a last point, if society and the medical profession can do nothing for this condition than why not make euthanasia available for those who would choose it? Why is anyone other than myself the one to make a decision about whether or not I should suffer?

One thing I've learnt from this is even people you think love and care about you are actually utterly selfish in their 'love'. They have your interests at heart as long as it doesn't conflict with their interests and happiness.

This is one thing I realized very early on about CBT- it was all about changing my negative thoughts so my behavior would not negatively affect others.

TC

 

[Vicki14]

Because it's going to be a long old wait for another passing ship on fucking misery island.

God! Isn't that just the truth! You convey things so clearly and in a way that those suffering truly get it. I hope to god our ship will come in. Until then, get the pennies saved up! x

 

[Gman]

what?

Yes. https://www.google.com.my/amp/s/www...ed_noise_in_an_anatomic_silicon_ear_model/amp

 

[fishbone]

God! Isn't that just the truth! You convey things so clearly and in a way that those suffering truly get it. I hope to god our ship will come in. Until then, get the pennies saved up! x

The teacher appears, when the student is ready.

 

[Dr. J C Miranda]

@Greg Sacramento, @PaulBe, @Michael Leigh: Thank you for your considerate, well reasoned constructive comments.

@Bam: It surprises me that you list neck problems and stress as the causes of your tinnitus yet you seem not to understand/appreciate my suggestions.

@Autumnly, et al.: Clearly, many Tinnitus/Hyperacusis suffers are highly emotionally invested in these issues and with good reason. I apologize for my pessimistic comments and deflating any of your hopes... it was insensitive of me to do so.

Perhaps my comments will seem less hurtful if I explain myself...
When I stated that:
" I wouldn't recommend anyone wait around for research to provide solutions- this will likely never happen for numerous self serving reasons."
1) I meant to encourage T & H suffers to actively seek or consider other (heretofore NOT considered) treatments, rather than merely waiting for the promise of research to manifest itself.
2) In the second part of my statement, I was alluding to the fact that much necessary research goes unfunded because the Return on Investment does not justify it (nefarious, because this cost benefit analysis does not take the human cost into consideration).

T & H has long been recognized and well documented. Despite many decades of research and study we have remarkably few effective treatments or solutions to offer sufferers. Thus, my pessimism. I hate to be the bearer of bad tidings... but, I understand that sometimes the messengers get shot.

Neuromod has a very promising and an exciting development, hopefully their device/approach will prove effective for a significant number of sufferers... I have no doubt that it will help some. Hopefully insurers will pay for it and it becomes widely available.

I would like to point out that I have come across numerous postings elsewhere on this site, in which people chronicle a history of treatment with several pharmacological therapies and other treatments without improvement at best, or with symptom exacerbation at worst. And none of them mention a musculoskeletal approach. It is these people to whom I was offering my advice. I recognize that this is a very specific and perhaps a narrow subset of the population of sufferers on these forums. Please excuse me for wasting your time.

 

[RoeTaKa]

I've seen a physiotherapist twice now in the last month. The first time I went I didn't feel much from it and felt I had wasted my money, but I was given an exercise program and decided to do it as instructed. After about a week I was noticing the stretches around my neck were providing some relief. I felt that if I got anything from that session it was how I should be stretching muscles effectively and more regularly. I decided if my second visit didn't show any results I'd stop going...but I came away from it feeling more relief than I expected. I'll be going for another visit soon.

I believe that the work I'm putting in is paying off and that subsequent visits will "unlock" my body, freeing the muscles a little more. I know I have to put the work in with this if I really want to see the best results. I wanted to give it some time before I made a post about if it's truly working for me as I don't believe I'll be ever rid of tinnitus the way I'd like, but to be sure that something is being effective will be a huge relief.

I just wanted to chime in and say that physiotherapy might be a big help to some tinnitus sufferers, especially if they're aware it's somatic or physically reactive in some way. But I don't think people should get the idea that you see someone and that's it, you have to put a lot of work in yourself.

 

[Lane]

none of them mention a musculoskeletal approach.

When it comes to a musculoskeletal approach, you're speaking my language! I've posted a fair amount about MS issues and some of my unusual experiences. My MS issues go back many years, long before tinnitus onset earlier this year. Some of the things that helped me are upper cervical chiropractic; a specialized atlas "repositioning" technique called AtlasPROfilax; another great technique called nasal specific; various "e-cises" developed by Pete Egoscue; cranial sacral; and more. -- If you do a search on some of the things I've done, and insert my username, you'll get quite a few hits.

Most recently--since tinnitus onset--I've been doing weekly physical therapy, by a therapist who also uses cranial sacral extensively in her practice. I started this at about the 6-month mark, and this work been making a slow, gentle, and subtle difference in my tinnitus volume, intensity, and ability to deal with it. Interestingly, the two session that I felt I gained the most from were when she worked extensively on my right knee, and another session when she worked extensively on my right shoulder and arm.

I've often wished others on this forum would look into these therapies a little closer, especially those that have suspected or known neck issues. I think there's a good chance one or more of these therapies could help a lot of them. I've even wondered if that @Bam guy were to try it, perhaps he could get over some of that insolence and those "psychopathic" tendencies of his. -- (Little inside joke for TT regulars--couldn't help myself).

 

[Bam]

surprises me that you list neck problems and stress as the causes of your tinnitus yet you seem not to understand/appreciate my suggestions.

Mate you entirely missed my point then. I've had countless hours of physical therapy, acupuncture, chiropractor, and everything else you can think of.

BUT as I tried to explain to you once tinnitus starts - regardless of cause- it gets in the brain and none of this will get rid of it. The brain needs resetting.

I know this from first hand experience as regrettably my T started in one ear and then as panic and fear kicked in it made the leap in to the other and shot up in volume as it spread like uncontrolled wildfire.........Scary shit my friend. Let's hope you never have to experience it. Trust me you want a cure for this just like us. If there was any disease on earth I wouldn't wish on anyone it's this.