Suicidal

How long does it take to get it once you file the paperwork? How long does the process take until money is deposited to your account?

 

Do experts arrange for tinnitus sufferers to obtain an EEG? No.

Nothing is set up or structured to help tinnitus sufferers with disability applications. It doesn't matter if you live in Canada, USA, Denmark, Germany or Australia. I think some guy on here claims it's easier in the UK but readers should be able to recognize a pattern here. A physical disability must be witnessed (I.e. mobility problem) or a mental illness must be demonstrated by medical documentation. I don't know about there but in socialist Canada, the process is long, unsupportive and tinnitus sufferers have no help in getting it.

 

In Canada you need to talk to a psychologist for 16 minutes, ball your eyes out, say you wish for death every single day and he will write you a medical opinion you are unfit to work.
Your primary doc report isn't enough.
I agree severe tinnitus in and of itself isn't considered an automatic disability anywhere... Although I did know a guy from Wisconsin who told his doctor he has severe tinnitus and she got him approved for disability benefits first try...

I really don't get why medical community underplays severe/catastrophic tinnitus.
Not our fault EEG isn't standard for diagnosis in 2020. EEG is old school, better imaging technologies exist for brain mapping. There is qEEG with Loreta... magnetic imaging... etc.
Tinnitus hyperactivity is very visible.

 

Here in Australia getting approved for disability is almost equal to winning lotto.

Disability for tinnitus... disability for what?????

 

I have been told by several medical professional (including my former GP who attends my workplace) "Nothing can be done for tinnitus" My current GP only had "a lot of people are getting that."

I thought of going to ER and asking for psych help stating I can't take living like this anymore. Refrained from doing so figuring they would just pump me with poisonous meds.. We truly are doomed.

 

@dan

Did the guy from Wisconsin have kids by any chance? I was told this was a way to get approved when you would otherwise get denied because they are worried about the economic instability's effects in the children.

 

Why do doctors not keep up to date with research? It makes no sense.

They are literally stuck in 2003 as research takes 17 years to translate from the clinic to them.

 

The only positive recourse I have been allowed was when a letter to the City of Chicago Courts from my audiologist describing the extent of my tinnitus got me exempted from jury duty. When I had to go a few years ago the high pitched tea kettle sound made by the building's heating system matched exactly my internal tinnitus. And believe me, this had to rank as one of my ultimate, merciless all-time torture sessions.

Julian Cowan Hill has said that you should regard tinnitus as only a small fish in the total pond of your awareness. The imbecile nature of his analogy is revealed when instead of a small fish tinnitus turns into a great white shark.

 

Intelligence insulting habituation clowns such as Julian Cowan Hill are part of the reason why nobody takes tinnitus sufferers seriously.

 

Nope, no kids.
32 yr old from Janesville, WI.
Married, no kids.

 

I really don't think CBT is the problem. If CBT was defacto from the start, research would have been ongoing. CBT didn't hold back research like TRT did.

TRT is the problem. It was 3x times as expensive as CBT and it made pseudoscientific and controversial claims about treating hyperacusis and Jastreboff has shown incompassion criticizing the disabled who are suffering.

Jastreboff represents a perfect example of 20th century behaviorist psychology. Literally a living fossil.

 

Hyperacusis no longer causing issues in everyday life and feels almost 'normal' but not quite as I still have intermittent facial symptom.
Normal environment noise (insidr and outside) = fine
Phone calls/speaker = fine
Radio = fine

But laptop speakers = still a bit problematic. I still get facial tension + overall face and ear tightness after like 30 mins. Granted it's pretty mild and doesn't really result in that horrible burning ear pain wind-up but it's enough to leave my ears/face feeling somewhat...tender. It's definitely still milder than it used to be but it's just taking absolutely ages to go away. Funny how my ears can handle some forms of processed artificial sound e.g phone calls but laptop speakers even at a lower volume are still more troublesome.

 

If you were profoundly deaf at any frequency within normal speech range you would know all about it. I suffered SSHL in my right ear a month ago, I've improved a bit since this audiogram was taken but there are plenty of every day noises I hear with my left ear and not at all with my right, e.g birds tweeting. Its particularly noticeable when I watch a movie. I watched Chain Reaction (Keanu Reeves & Morgan Freeman) duing my HBOT session yesterday and there were so many sounds picked up in my left ear not at all picked up in my right

 

Might be a good idea to check whether it's because of the speech in phone calls versus music from the laptop. Or maybe you mean conference calls via laptop?

Could be your particular laptop speakers too? Sound quality isn't exactly at the top of the priority list when laptops get designed and built to meet a certain price point. Same goes for phones so in your particular case it's odd, but maybe check with someone else's laptop?

 

Yeah I think it's definitely something to do with the speaker quality on my laptop- it's got that typical low-quality 'tinny' sound. Before my setback I didn't have any issues with it but now the sound quality feels kind of abrasive and scratchy after like half an hour of listening. I just got a new phone like a month ago so the speaker quality is probably way better.
Hopefully this will all resolve soon.

 

Tinnitus is absolutely screaming. Insanely loud with crazy tones. This is when I wish I had a gun or could stick a syringe in me to put me in a permanent sleep.

It seems like the worst or loudest t/tones are coming from my *right* ear and head/brain.

So if research treatments (eventually) work, they can treat the brain too? I am still unclear how it works but I think it's very important for 'experts' to treat this 'integration' or 'relationship' between the inner ear (hair/nerve cell and cochlear damage) and the brain. 'Curing' ear pain, regardless of whether its hyperacusis, noxacusis or something else, would be nice (bonus) too.

 

There are methods which will hopefully cure the hair cells (FX-322), some which will affect the synapses (Hough), and some which attempt to solve the problems in the DCN (Susan Shore). @Killer made a very compact summery of most of the promising technologies in the pipeline. Try to check it out.

 

I think it will take a lot of trial and error to perfect hair cell regeneration. We are living in a world where bio-companies can't take risk.

 

I can't believe you're from 1445!

On a serious note, during my own HBOT sessions there was a guy who made a full recovery from SSHL. (Unknown cause but likely vascular) Someone else with a loss due to viral infection had no such luck. Don't know about later on. They claim improvement rates up to three months after the sessions, which at the time seemed a bit shady.

Good Luck!

 

Since my severe worsening, I’ve come to a realization. At least in my experience, the early days are full of anxiety. I would try to seek reassurance in the hopes that my tinnitus would fade in time. Unfortunately, for myself and many others here, that is simply not the case.

As time progresses, that anxiety changes to anger. I became angered at the way TRT is regarded. Go to tinnitus websites or forums and you will find TRT success stories where sufferers turned their lives around. Fortunately for many of them, their tinnitus was mild to begin with. While it may help a select few, it is not even comparable to the concept of regenerative medicine. Biomedical sciences will always produce stronger results than trying to train someone to live with a horrible condition. We need less coping and more treatment. Finally, there seems to be light at the end of the tunnel with potential upcoming treatments.

Another thing: It’s ironic how the delivery network of FX-322 will involve ENTs. The last couple ENTs I’ve been to knew nothing about it and said it will be many, many years before tinnitus is treatable (if at all). All of a sudden, these same ENTs will receive instructional guidance on how to inject the life-changing gel into our ears. How can they not be aware of significant advancements in their field? Tinnitus has made me more cynical, but it’s made me see things as they actually are.

 

I think HBOT reverses cochlear inflammation in the early stages before hair cells and nerves die. HBOT along with laser therapy are two alternative therapies that appear to have some positive results and are not suspected of being harmful. (like the tonaki tinnitus protocol BS)

 

contradictory information lol

 

Sorry if you need to repeat yourself but what was the reason for your setback with hyperacusis?
How did you overcome burning?
I’m under the weather at the moment

 

Yes I agree. I believe that the window of opportunity before hair cells die is much shorter. I wonder if any improvement after, say, 72 hours is due to improved remyelination of the auditory nerve or improved brain oxygen perfusion driving brain plasticity. It has been shown that people can hear in cochlear dead zones or zones of great hair cell loss due to off-frequency listening, where neighbouring hair cells can take over the function of the dead region. I don't know to what extent that is possible. It really points out the obsolescence of the standard hearing test. They would be better of doing an EEG. But you know... money.

There's almost no point in doing an EEG to check for hearing loss, it's not like they can do anything about it at the moment. Yes, you can have one done at your own expense, to put your mind at rest and find the root cause of your problem.

Audiologists are aware of the shortcomings of the testing procedures, and most know about hidden hearing loss and the vast array of hearing disorders that don't show up on an audiogram, it's just that diagnosing these symptoms doesn't give them the opportunity to treat anything with the remedies at their disposal. So they just go about their business as usual. That's why we're running in circles. Also, because most people habituate automatically, I guess a significant number get counted as having benefited from TRT, which keeps the show running.

 

I don't know @Contrast. Why is this contradictory? Clearly whatever was going on helped that person. In COVID-19 times, even people that have no health issues are more prone to mental health problems so it shows that we're not designed to have no purpose and be idle...

Keeping busy makes a difference for me and many people here on the forum, and sometimes you need a nudge from the outside because you can't orchestrate it yourself. That's where medication and therapy comes in.

 

Initially being exposed to a loud car stereo for a few hours and then it worsened from listening to stuff on my laptop at a low volume - I had never had any issues with my laptop speakers until then so I am guessing my ears were in a super sensitised state and it pushed them over the edge.

My ears can pretty much take every everyday sound now and I credit my recovery to time, quiet and lockdown. But my ears still react to laptop audio even though phone calls are fine and radio is fine (better speaker quality?). Even on low volume my laptop audio just feels like it is piercing my ears and scratching them and it just feels really 'sharp.' It also makes my tinnitus feel really piercing and almost physically uncomfortable. Hoping that it will still subside... it seems truly bizarre to me that everyday else should improve but I should still have sensitivity to very specific sounds.

 

I so share you frustration over the unfathomable divide between the research world and clinical world of tinnitus...I still can’t wrap my brain around why this gap exists so severely for our condition...

But at least a substantial portion of these ENTs who know nothing about tinnitus will likely not be training to IT shots. They wouldn’t want to take on the extra liability, and probably have no interest in it.

I honestly consider most ENTs to be “NT”s tbh. Unless you have a straightforward ear infection they’ll simply pass you over.

Most of us will have to see an otologist or a Meniere's ENT who have already been trained, and have been giving the shots for years.

Personally, I wouldn’t want any new freshly trained ENT sticking shots in me anyway, and I was lucky enough to be referred to someone who has done 300-400 injections so far (without any complications). And interestingly enough he was well aware of FX-322 and even the work being done by Pipeline. It just freaking sucks though that he’s the exception rather than the norm...

 

It is surprising how few ENTs seem to be aware of the potential for hearing regeneration let alone that there are clinical trials! You'd think they'd at least have some knowledge of this stuff as part of CPD or something. It's heartening that some of them at least are on the ball about it and, going by Frequency's latest presentation, the response amongst the ENT/audiology community seems to be pretty positive.