G'day from Brisbane, Australia

[Mike82]

Hi all.

I'd say I'm pleased to make your acquaintance, but sadly given our collective circumstances, I suspect that's not really the case for any of us!

Anyway, since this is an introductory thread, I'll share my sad, sorry tale of Tinnitus woe. I actually wanted to do it now as I've got a "hearing test" with an audiologist (at $AU160!) tomorrow and I reckon this situation is going to get worse before it gets better.

Anyway, I'm the poster child (well... at almost 33, one can still dream) for not listening to loud music through earphones. I've actually been doing it since my mid-teens (on a Walkman!) and have been aware of the mild buzzing my head for the best part of almost 20 years.

I've also been to literally hundreds of punk shows (or concerts, for you bluebloods out there) in my life and, inconceivably now that I think about it, have stood far too close to the amps even into my early 30s.

But about three weeks ago, completely out of the blue, my Tinnitus changed... and I guess you could say I now have a full-blown case of the affliction.

For whatever reason, the intensity, volume and at a guess the pitch totally increased. I also noticed that my right ear in particular feels really full and I'd been wondering if maybe my Eustachian tube was blocked and was somehow amplifying the sound?

A few things seemed to precipitate the event. One, I was going through a bit of stress at work. It seemed no more than usual (and I'm a total stress-head) but for whatever reason, it seemed to have a really adverse effect on me.

Secondly, I tried to to tune into the cricket through earphones on an old AM/FM radio, right next to my work computer. Not only could I, for whatever reason, not seem to turn the volume on the radio down... but it kept reacting to the computer and I was getting tonnes of high-pitched interference. I listened to it in various states of noisy interference for maybe two or three minutes at most. Surely not enough to do major damage, right?

Lastly, I fell off a fence about 18 months ago. I landed on my feet, but awkwardly, and along with physio, chiro and various other treatments of varying success, I'd been taking a fair few medications to try and stem the pain; namely Panadol Osteo, over-the-counter ibuprofen and three or four times a week, Aspirin. I had no idea at the time that any of them might be considered ototoxic.

Perhaps it was the last of that list that did the damage, because ever since I stopped taking medication (my back no longer hurts) I seem to have suffered a huge spike in Tinnitus. It's especially loud in my right ear, to the point that my GP prescribed me two rounds of antibiotics on the suspicion that I 'may' have a middle-ear infection.

I actually suffered what I supposed would be termed a panic attack just before Christmas, such was my distress at how loud the Tinnitus was. I had an appointment to see my regular GP, but took a few days off work and saw a different GP a day earlier to try and get some relief. He prescribed me Valium (seriously!) and offered a decidedly glib "get over it" response. My regular GP is much better than that, but I suspect he too probably wonders what all the fuss is about.

Anyway, at the moment I'm stuck with a distinctly loud buzzing between my ears. Of course, I know we all are, but I just thought I'd share my own story... as much to try and keep myself sane as anything else!

I'm particularly interested in hearing back from fellow Aussies suffering from this horrid affliction. It's such a curse of a problem, yet it seems so few in the medical industry seem to understand/care about it? I have a feeling my audiologist tomorrow is going to try and push Neuromonics on me.

Anyway, sorry for the long post. Any and all replies are welcome. I look forward to hearing, albeit poorly, from all of you. And I hope that we can somehow collectively get rid of this curse ASAP. (Preferably before tomorrow morning, so I don't waste $160).

Mike from Brisbane

 

[jessicabee]

Hi Mike

Thanks for sharing your story, but sorry to hear you're in the grips of anxiety due to your T.

I can say wholeheartedly in my opinion, anxiety is the worst thing for T. And in coming to terms with T, the first step is tackling the fear and emotions that come with it.

My T has increased in volume for almost a week now, whereas previously it's never really bothered me or appeared that loud, I'm also suffering a blocked Eustachian tube which gives a feeling of fullness in the ear.

I wish I could offer you a miracle solution, but I can't, I'm reassured in knowing that there are audiologists worldwide working to find a cure. Until then, let's all support each other.

 

[billie48]

Welcome Mike. We are frozen in the frigid north and I envy you guys down under. Will love to go fishing there in the warm breeze of summer but our reality is cccccoooolllldddd here. LOL.

Sorry to hear that you are struggling with your T and even hit with panic attack. I know panic attack very well. I suffered anxiety and panic disorder for decades prior to tinnitus and hyperacusis. T & H literally opened the flood gate of hell of relentless anxiety and panic attacks on auto mode back a few years ago when T & H hit me out of the blue. I was in a mess mentally and physically. I thought I never would recover, but here I am today living a normal and happy life.

Stress is one thing which can trigger and worsen a normal T. If you ever go on a vacation, you may feel T will calm down a bit. So try to do something to relax you, things like leisurely walk, jogging, hiking, camping, hobbies like fishing, sports etc. You may want to get some masking going so you won't be so anxious and panicky about the T sounds. If your anxiety/depression/sleeplessness is severe, consider the temporary use of meds. You can phase them out later. I had to take meds to survive my darkest days. But I don't use meds for my T or sleep anymore.

I think Australia particularly Victoria has a nice set up of tinnitus association for tinnitus support. I read up their materials a lot during the initial days. Here is a link you can read up"
http://tinnitus.org.au/

As a new T sufferer, your T may fade or disappear. You will never know so don't panic. Even if it stays, people can still habituate to it and live a normal life. So relax. Read up the success stories so you know that people do get better after some time. Take care and God bless.

 

[Mike82]

G'day Jessica and Billie,

Thanks for the replies!

I tend to be a fairly straight shooter, so experiencing a panic attack was something completely new to me. I was evidently extremely distressed, though lucky enough to live with a girlfriend who was smart enough to calm me down and put me straight to bed.

I actually feel 'okay' at the moment... just baffled as to why my tinnitus suddenly seems to be so much louder. I've been wondering if it has anything to do with the fact I take an over-the-counter sleeping tablet from the United States called Unisom. I've been doing so on and off since last May... maybe that has increased my symptoms?

Anyway, I had my hearing test this morning, but it was effectively useless. They told me my hearing is fine, albeit with some expected hearing loss at the high frequencies, which I a) already knew and b) is to be expected given my lifestyle.

I've got another test on Monday with a different audiologist. Both places, however, push Neuromonics... so I'm slightly sceptical that it's mostly about pushing an expensive treatment on me.

Anyway, as for the weather, I bet it's a fair bit warmer here in Brisbane than either Devon or Vancouver! I'm actually off to the tennis tonight, so hopefully that'll take my mind off things for a while. Shame Sharapova is on court though.

Hope we're all feeling a bit better soon!

 

[Mike82]

So I'm a month in to this wonderfully incessant 'Eeeeeeeeeeeeeeeeeeee!' sound that has been drilling so much high-pitched joy into both my ears.

I'm resigned to the fact that it's not going away any time soon and I've also come to the fairly obvious realisation that virtually every GP, audiologist and ENT around (though I've not even been directed to see the latter) has little idea of how to treat this malady.

Anyway, I saw a different audiologist on Monday and she pretty quickly gave me the Neuromonics spiel. But she also offered me the chance to trial hearing aids for a week - something I wholeheartedly plan to do.

I'm hoping against hope that they'll help provide some sort of relief, although I suppose I shouldn't expect any miracles.

 

[Amelia]

Hi @Mike82 - another Aussie here (near Sydney!) and I think, if the 82 in your username is anything to go by, another 1982 baby? I'm inching closer to 33 and none to happy about it! haha

Sorry to hear you are having a rough time of it, but I gotta say, my experience with medical professionals is pretty much in par with yours. Will be interested to see how you go with the neuromonics if you go ahead with it.

I don't know enough about T and medications, but it know most of the members here are pretty careful with what they put into their bodies. Maybe give melatonin a shot rather than those sleeping pills if you aren't sure about them? Or even magnesium can help you relax.

Hope things settle down for you soon, and let us know how you go!

 

[Mike82]

Heja Amelia. I turn 33 next week... what a pleasant disorder to mark it with! (not)

I'm actually from Sydney myself. One of the reasons I wanted to specify that I'm in Australia is because we seem to be way behind other nations in acknowledging that the condition even exists!

The first audiology clinic I went to refused to do a "tinnitus test" until I'd done a hearing test (with them... at my expense), even though I'd recently done a hearing test elsewhere. Then, when I tried to ask the audiologist about my tinnitus, she said - and I quote - "I know nothing about tinnitus." How is this professionally possible?!

The second place I went was better and it's from them that I'll be trialling hearing aids next week. But they also gave me what sounded like a word-for-word sales pitch from Neuromonics (but hey, if Neuromonics actually helped me... I'd use it).

One of the most frightening things I've experienced from the medical community over the past month - and I sense it's a common frustration across this forum - is just how elementary the knowledge of tinnitus has been from the GPs and audiologists I've thus far seen.

"Oh, your tinnitus is caused by high-end hearing loss."
"Yeah, I know that."
"Don't stress, you're not going deaf!"
"Yep, I'm aware of that. Is there anything you can do about this incessant screaming in my ears?"
"Hmm. I suppose you'll just have to get used to it?"

This is clearly the sort of medical problem that people can only understand once they've got it. I suspect that's why there's a total lack of urgency from government-funded health departments to tackle it.

 

[Ray Seddon]

Hi Mike
Just to say Hi from West Aus - as you can see I am a 29-year sufferer, however the volume of me 'ole mate Mr T increased (30%) about a year ago. I just wanted to mention Neuromonics - I gave them $5G about 15y ago and it did absolutely nothing for me. But I have to add that it seems to me they have come a ways since then - there was no counselling back then and all I got for my wad of notes was a series of hearing tests (my hearing is not bad), an expensive mp3 player that actually packed up within eight months, and a push to purchase a $2000 set of hearing aids, but although my experience wasn't a happy outcome, they may have a new approach. I strongly suggest you research Pawel Jastreboff and Jonathan Hazell (Google) - these guys wrote the manual on Tinnitus Habituation. If you can find someone that practises their model of treatment you may get some results. Personally I am doing my own thing based loosely on Jastreboff's method - I use mp3 players loaded with white and pink noise, play these all night - I sleep like a log, although Mr T used to keep me awake - and in quiet times through the day; I use earplugs to deaden loud noise (I plug the mp3 earphones in my ears at movies but not plugged into the mp3 - I don't miss any dialogue but it cuts the ridiculous levels cinemas seem to play movies at). I also use earphones with music on the bike to cut down wind noise, which is surprisingly high in decibel levels. Doing all these things has eased my stress over Mr T considerably, and most days if I am busy I don't notice it at all even though it is screaming; other times the volume level is decreased a little.
Anyway, welcome to this forum - I find it's comfort of a sort to know we're not alone with this crazy condition that no-one else seems to know or (medicos) don't care about. Do read up on Tinnitus Retraining Therapy.
Cheers
Ray

 

[Ray Seddon]

PS I have to retract some of my snipe at medicos - Dr Nagler on this forum is extremely knowlegable and helpful - I always look forward to his posts, full of common-sense and understanding (he is a fellow sufferer). So, no, not all medicos are uncaring, and I'm sure there are others out there. Just that I haven't found any yet (even my own doc) - lol.

 

[Mike82]

G'day Ray, and thanks for the reply.

The big issue that I've encountered from some of the medicos so far is that the problem just seems so inconceivable to them. Most of the advice I've received has veered from the patronising to the downright laughable. It's so clear to me that they honestly cannot imagine what it's like to have these sounds in your head 24 hours a day and thus they struggle to tailor an appropriate response (if any) to the distress that it causes.

I'm extremely sceptical about Neuromonics. I've actually booked in to see someone who specialises in TRT next month... it was one of the first things I did. I think because I always used to have a (soft) buzzing in my ears, I wasn't as surprised by this full-blown tinnitus attack in a way that others might have been.

But I'd be lying if I didn't admit that I'm extremely worried about how I'm going to get through the rest of my days with this. Fingers crossed that modern medicine comes across a solution sooner, rather than later.

Thanks again for your reply. I really appreciate it.

 

[Paul Burdett]

Hi Mike...Paul from Brisbane here. Sounds (excuse the pun) like your situation is similar to mine...I didn't think a day at Willobank raceway (and yes, I had ear plugs in) would change my life. I saw an audiologist who said I had some high frequency loss (expected at my age...61) in both ears but worse in the left. I have T in my left ear...sounds like Cicadas...the audiologist said a notch at 6KHz. I went to the Neuromonics people in Brisbane. They wanted $995 for a glorified mp3 player and $6000 for a similar player, but with the music adapted in some way. I've seen Youtube videos showing how you can fiddle with sound files to create your own 'neuromonics'. It seems, from my research, that it's a large sum of money to pay for something that "may" reduce the severity of the T after a year or so!
After 7 months with T I have days where it's almost nothing, and days, like today where it's raging. Stress is a definite trigger for me...as a high school music teacher, stress is, at least for me, related to an increasing work load.
If you go ahead with neuromonics I'd be interested in how you go. Take care.

 

[Mike82]

G'day Paul.

Nice to hear from you... well, so to speak!

I'll go down the TRT route before I try Neuromonics. My background is in journalism and I've noticed when dealing with the audiologists that there seems to be a certain reliance on 'gullibility' - for want of a better term - to try and sell their products. I've heard from one that Neuromonics is "the only thing that will work" - when a simple Google search reveals that most people haven't had great results.

Anyway, I'm somewhat resigned to the fact that this tea-kettle whistle in my ears seems here to stay. Here's hoping there's a medical cure just around the corner.

 

[Joanna Foster]

Hello there! I'm in Brisbane too, sharing my head with Mr T.. I know this post is a little bit old but I am curious to know how your journey is going. Did you manage to find relief with TRT? I'd love any recommendations for Brisbane based therapist.

Really hoping that you are happy and stable Much love!

 

[Michael Leigh]

Hello there! I'm in Brisbane too, sharing my head with Mr T.. I know this post is a little bit old but I am curious to know how your journey is going. Did you manage to find relief with TRT? I'd love any recommendations for Brisbane based therapist.
Really hoping that you are happy and stable Much love!

If you are new to tinnitus @Joanna Foster, I advise you not to pursue TRT treatment at this time. Leave it for at least 6 months preferably a little longer.
Michael

 

[Kelvin]

Hi Mike

Thanks for sharing your story, but sorry to hear you're in the grips of anxiety due to your T.

I can say wholeheartedly in my opinion, anxiety is the worst thing for T. And in coming to terms with T, the first step is tackling the fear and emotions that come with it.

My T has increased in volume for almost a week now, whereas previously it's never really bothered me or appeared that loud, I'm also suffering a blocked Eustachian tube which gives a feeling of fullness in the ear.

I wish I could offer you a miracle solution, but I can't, I'm reassured in knowing that there are audiologists worldwide working to find a cure. Until then, let's all support each other.

Wow another Devonian with T. Hello fellow Devonian...sorry for interrupting that thread !

 

[Joanna Foster]

If you are new to tinnitus @Joanna Foster, I advise you not to pursue TRT treatment at this time. Leave it for at least 6 months preferably a little longer.
Michael

Hey Michael, thanks heaps for your reply I'm struggling and I feel as though I need to take action to stay sane. I have a mild to moderate hearing loss too which is where i guess my T comes from. I might try with hearing aids but I'd rather habituate rather than rely on these little machines just yet. I'm functioning more or less well in normal conversation... comprehension-wise. I am an anxious person by nature...

Why do you suggest 6 months?

 

[Michael Leigh]

Hey Michael, thanks heaps for your reply I'm struggling and I feel as though I need to take action to stay sane. I have a mild to moderate hearing loss too which is where i guess my T comes from. I might try with hearing aids but I'd rather habituate rather than rely on these little machines just yet. I'm functioning more or less well in normal conversation... comprehension-wise. I am an anxious person by nature...Why do you suggest 6 months?

@Joanna
Hi Joanna,
I believe it would be better if you make an appointment with an Audiologist and get fitted with appropriate hearing aids. You won't habituate properly without them in my opinion. Your brain will try to compensate for the hearing loss by increasing its internal gain (volume) this will also increase your tinnitus. Once your brain is supplied with enough sound from the outside world, it will gradually reduce the tinnitus.

Please read my post below titled: What is TRT and when should it be started. If you have time click on the link at the bottom of the page and read my article: Tinnitus, A Personal View, that you might find helpful.
All the best
Michael

What is TRT and when should it be started?

I have talked about TRT in many of my posts. One tinnitus talk member recently told me that I have mentioned it no less than twenty five times. He went on to ask, am I an Audiologist promoting my practice in this forum purely for business purposes? Another member was quite disgruntled and told me to stop mentioning it because where he lives the treatment is expensive and can't afford it. It just goes to show one never knows what is going on behind the scenes when you think no one is watching.

I understand and empathise with people that are unable to afford this treatment or any other to help one's health but don't feel this is a good enough reason for me to stop mention it when I believe it can help, having had TRT twice in the 20 years that I've had tinnitus. I am not an Audiologist. I just consider myself like many others at tinnitus talk, who want to help people that are having a difficult time coping with this condition, as I was once helped many years go when I first got tinnitus.

Some people have been sending me private messages asking if TRT cures tinnitus? A member mentioned having two sessions with their Audiologist and was shown some slides, and told that anxiety can make tinnitus louder. Understandably this person wasn't sure if this was TRT, and then asked if it's something they could do on their own? As I have mentioned I have had TRT twice and I also have the Tinnitus Retraining Therapy book, written by Professor Pawel Jasterboff and Jonathon Hazell. It is available at Amazon should anyone wish to purchase it.

It is the reference book that Hearing Therapists and Audiologists follow when practicing TRT with their tinnitus patients. There are two parts to the treatment. Counselling and sound therapy. Sound therapy is supplied by wearing two white noise generators and then using a "sound machine " at night by the bedside for sound enrichment. If hyperacusis is present the sound therapy will also treat it. Throughout the TRT book there is no mention that this treatment cures tinnitus. TRT or Tinnitus Retraining Therapy, is what it implies: Through regular counselling sessions there is a gradual retraining of the way a person thinks about tinnitus and to treat it as non life threatening.

At first the therapist discusses with the patient how the tinnitus makes them feel and how it has impacted on their life. Often people say they have lost interest in the things they once liked doing, which is perfectly understandable. The main goal here is to gradually help them look at life differently and with a more positive outlook. Over time the negative thinking that is often associated with tinnitus and hyperacusis is gradually dispelled and demystified.

The Hearing Therapist does this in a controlled and precise manner so that the patient feels relaxed and not pressured. In many instances the tinnitus is gradually pushed further into the background making it less prominent. Therefore, it must be stressed and understood, this treatment takes time. To complete a course of TRT takes approximately twelve to twenty four months and in some cases longer. The duration of each counselling session is left to the discretion of the Hearing Therapist. Typically, these can last up to one hour or more. The amount of appointments required will be different for each patient, but it is quality rather than the quantity of the counselling that really matters.

There are a few misconceptions about this treatment and the way it is administered that some people misunderstand which I want to address. If a patient is given one white noise generator to wear this is not TRT. When two wngs are issued and no tinnitus counselling is offered on a regular basis, it is not TRT. I am not saying that a patient will not gain any benefit from the above treatments; I only want to state they do not follow the proper Tinnitus retraining therapy protocol.

When should TRT be implemented or started?

The following is based on my own opinion and therefore is not professional medical advice. The onset of tinnitus can be quite an emotional roller coaster for a lot of people, and I believe a person needs time for this to settle. Many people habituate within the first 6 months to one year of the onset of tinnitus without any treatment. If a person just has tinnitus without any additional symptoms, such as dizziness, deafness or balance problelems. I think a period of six months should elapse before starting a long-term treatment such as TRT.

Michael
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

 

[Pleasure_Paulie]

Hello there! I'm in Brisbane too, sharing my head with Mr T.. I know this post is a little bit old but I am curious to know how your journey is going. Did you manage to find relief with TRT? I'd love any recommendations for Brisbane based therapist.

Hi Mate, I'm from Brisbane. I've been to heaps of doctors, ENTs and audiologist in my time.

If you want general advice, and a hearing test the only guy worth seeing is at Neurosensory in Chermside. He is a fellow tinnitus sufferer and an expert in Tinnitus that lectures at QUT etc on the topic. He also has the gear to do high frequency audio tests as well. Just ring them up and tell them you've heard there is a tinnitus expert here and they will know who you mean.

If you need to get a hearing aid due to hearing loss, visit Soren Nielsen in Ashgrove - he is a VERY senior Audiologist and known all around Brisbane for this reason. He is also a tinnitus sufferer.

Go and speak with them if you need help so you're getting expert advice from professionals. I met with and saw quite a few others and they are all useless in regards to tinnitus who just want to sell hearing aids.

As for ENTs, they have all been a steaming pile of crap in Brisbane.

 

[coldroses]

Hi Mate, I'm from Brisbane. I've been to heaps of doctors, ENTs and audiologist in my time.

If you want general advice, and a hearing test the only guy worth seeing is at Neurosensory in Chermside. He is a fellow tinnitus sufferer and an expert in Tinnitus that lectures at QUT etc on the topic. He also has the gear to do high frequency audio tests as well. Just ring them up and tell them you've heard there is a tinnitus expert here and they will know who you mean.

If you need to get a hearing aid due to hearing loss, visit Soren Nielsen in Ashgrove - he is a VERY senior Audiologist and known all around Brisbane for this reason. He is also a tinnitus sufferer.

Go and speak with them if you need help so you're getting expert advice from professionals. I met with and saw quite a few others and they are all useless in regards to tinnitus who just want to sell hearing aids.

As for ENTs, they have all been a steaming pile of crap in Brisbane.

My goodness, someone else in Brisbane with T - and multiple others! Living proof I'm not the sole sufferer of T in this place.

I believe I saw the very same audiologist at Neurosensory (I think) - he was far and away the most sympathetic specialist I've seen in the last 3 years (and there's been a lot of them). I fully agree that he's the only audiologist worth seeing purely because he understands the emotional fallout. He didn't push Neuromonics on me either, which I appreciated.

Everyone else has been entirely forgettable, sorry to say. It's true that ENTs and neurologists know next to nothing, at least here.

 

[Mike82]

Hi all. My apologies for not checking back on this thread for what appears to have been several months.

Unfortunately I've still got raging tinnitus. Seems I'm not the only one!