Search results for query: *

There's schemes like the NDIS here in Australia that will pay for such things and look into getting you the relevant appointments with the doctors you need to see as well. But you need to apply and be accepted which can be difficult for some people.

At the stage I'm in I'd go for this treatment on my own dime if it was available here in Australia. Unfortunately it isn't and I'm having a hard time getting any treatment I find meaningful. At one stage I was very close to having myself committed as I lost my temper with an audiologist I was...

I can answer that. I applied for the study from northern NSW and was told that they were limiting the study to the Melbourne area for the moment, but they did put me on a waiting list if the study expands the area to other states.

Thing is most of those clinics are in the U.S right now which stinks for those of us that don't live in the U.S. Once they roll out Phase 3 I'm really hoping that they get more international clinics and ENTs to join in the trials, as traveling to the U.S right now is something I'd prefer to...

So if and when FX-322 is released, will I have to go through an ENT? Or could I just contact the drug company that they have the right to distribute with and ask them to sort if out for me, or at the very least, steer me in the right direction? Very worried about consulting the wrong ENT, as...

I'd like to get into the trial as well, but seeing I live in Australia and the trial in is the U.S with the current circumstances, just getting to the trial, if I was accepted, might be a tad tricky right now. Also the ClinicalTrials.gov site lists the current recruitment status as "completed".

So any idea how long these studies take to achieve some results that they can give a definite answer to? I'm just extremely impatient to try anything that may help me in any respect.

So does them going to Phase 3 mean that they can't apply for compassionate release next year if they decide to take that road? As I was really hoping that I wouldn't have to wait for multiple years before at least being able to try it, and an early release along those grounds would really mean...

I have some semi-good news. I contacted MyTomorrows regarding Compassionate Use of FX-322 and from the sound of the message I got, it sounds like it might be possible to get an EAP release to FX-322, or at least talk to them about such a thing. I'll keep you posted about any developments on...

I don't suppose there'd be a similar agency I could contact regarding FX-322's compassionate release here in Australia? Or when it's released in the U.S, does that mean it'd be available here as well due to the treaty between the U.S and Australia regarding that we use the FDA's drug approvals...

My ears are suddenly making a pulsing, ringing noise under my normal tinnitus. Is this tinnitus as well, or does anyone know what's going on here? As I said, this wasn't there at the start, it only suddenly happened a few months ago out of nowhere, and it has me severely worried about what...

I don't think all ENTs think that way, or I'd hope not. Seeing a lot of the ones I've seen seem to have tinnitus themselves, surely they'd want a cure if only for themselves?

Well I've already tried TRT via a company called Neuromonics, and due to them not really explaining what was going on, or doing any form of counselling or instruction, I'm where I am today. It did help for a time, but my ears eventually started hearing these high-pitched sounds which I first...

Thanks for that, as right now any encouragement is appreciated.

At least TRT and CBT are something to try, until new drugs come in that could provide more of a benefit. As I said I need something as due to tinnitus I'm currently doing battle with quite severe depression which isn't going so well. That is all I have, or would you rather I hang myself from the...

I wish that when it's released Frequency Therapeutics would have some kind of general list of all ENTs in all countries that were willing to work with them on FX-322. A list that they'd supply upon request. That way I'd know where and who to see to get this potential life-saving drug ASAP.

Exactly. I feel the exact same way, that unless I have some means of coping with this insidious noise that IS DESTROYING MY LIFE that I'll go insane soon. I've already tried to commit suicide twice, I need some way to cope in the meantime until true methods of fixing tinnitus are out.

@Michael Leigh Just curious, but is it possible for tinnitus to develop into something else, due to improper due of masking devices? As when my tinnitus started the ENT I initially saw wasn't very helpful so I purchased a device I was assured would mask my tinnitus, which it did, for a time...

Hopefully if that's the case they supplement with additional information to that fact. I know they are limited on what they can publish by the FDA, but updates on progress are needed as well. And yeah I know it's not going to be out this year but I was hoping for good study results in May next...

I hope not. I was hoping it'd be released sometime next year, early if possible, or am I being over-optimistic on that? I really want this to be out, as it's quite likely it's going to be released in Australia shortly after the FDA grants approval, due to the agreement between Australia and...

I think when FX-332 and SPI-1005 are released, as from my understanding those are the two closest to being released, it will be the light in the dark we all have been hoping for.

I didn't think SPI-5557 was even close to being released yet, unlike SPI-1005 which according to Sound Pharmaceuticals' web page is in phase 3 trial status, and very close to being released.

That may be the case, but I really wish they'd apply for compassionate use now. My tinnitus is driving me mad and I'm not sure if i can hang on until May without trying to end this miserable excuse of a life.

Me as well. A real cure for this thing is being awaited on by many people I suspect.

Yeah, according to my dentist, I don't have the symptoms of TMJ. Only thing I can think of is that the chronic headaches I've been experiencing triggered this off, as they started around the same time as the tinnitus. Sometimes I feel a pulsing motion in my head and ears when my ears ring in...

I'm not sure about that. I have no history of head trauma and I can't think of anything I've done that could've damaged my cochlea. Yet I have this hellish thing. I'm trying to hold on in hopes of some form of treatment coming soon, but it's hard, to say the least. It does just stop sometimes...

For the last few months my ears have been making strange ringing-pulsating sounds which has me worried. Anyone know why?

It would depend on the price of FX-322, but if it's going to help me at all, I'll move all stones I can to get this stuff. Anything to help rid me of tinnitus, or at least bring it down to something I can tolerate. But how would you go about getting a supply? Would you be able to contact...

That's nice as my GP and audiologist have repeatedly stated that my headphones are safe to use. Now that I find out that this doesn't appear to be the case and I have been making my condition worse which is already DRIVING ME INSANE and I have been thinking about suicide lately... plus I spent...

Seeing that my first ENT told me that there was no cure or even a way to mitigate my tinnitus and that I had to learn to live with it, I think I've lost faith in most ENTs and audiologists at his point, as they don't seem to understand fully just how devastating this can be. I'm beginning to...

Sometimes I wish they prescribed such things as morphine for tinnitus,as mine's driving me insane. Anything to get at least some respite.

I've got an appointment set-up in a few months so hoping for some good results. Wish it was sooner, but it's always hard getting in to see any neurologist.

Pity that it's too strong to use on living patients, as I understand it. I'd very much like to know what's going on with my ears.

Is there a way to find that out, as I understood that such things were beyond current diagnostic means? Just that it'd be nice to know so we know whether such things as FX-322 would work, instead of having to try everything and hope something works?

I only wish I lived in the U.S as here in Australia I'm not really sure on the "best" interventional radiologist is to see on my issues, but hoping you make a full recovery.

I wish the same thing as most of us don't have infinite resources to experiment in this manner. Finances for me are limited, and I'd hate to spend everything I have on for example FX-322 and find that I actually need PIPE-505, or OTO-413 instead.

I'm hopeful they accept your invite. I'd really like to hear from Otonomy on any insights or progress they feel like sharing on OTO-413 and its potential to fix tinnitus.

Unfortunately, no. I'm in Australia where we don't have such things.

Sounds like grounds for a lawsuit, if they continue that up. There is such a thing as false advertising, among other things.

More than a bit. The longest waiting list I had for a neuro was 6 months and my current referral for an Interventional Neuroradiologist resulted in a 2-month waiting period. Still sucks but as least I got in to see one, and seeing that my tinnitus ENT wants specific brain scans it should tie...

I'm really hoping that Frequency Therapeutics decide on a lower price than that. $2000 initially plus $500 for each additional shot is still a substantial amount. Unless they have payment plans for such things, for those of us that don't have medical health insurance.

I can't donate money right now, as before I found Tinnitus Talk, I depleted my bank account looking for a way to get at least some peace of mind. I need to build that back up again. But if there's any other means I can help in some small way, I'm always willing to help or at least try to.

The song of tinnitus sufferers,or it fits me anyways Never Ever https://www.youtube.com/watch?v=nPXqkjpXZ_k

Could someone take me out of this Black Hole? Cicadas seem to have moved into my ears again..

Could someone convince the cicadas that have moved into my ears to take a break and go annoy someone else?

I hope this is so, and soon. I've been trying to get into a study for some time since I learned on how to do so, but have been unsuccessful so far. Doesn't help that most of them are U.S based.

I know of at least one ENT that offers hyperaccusis management services. I guess it would depend on the patient's level of hyperacusis severity.

You might want to be careful with masking your tinnitus fully. I did that for an extended period and found my tinnitus reacting to the masking after a bit with other high-pitched sounds that were extremely difficult to mask completely. It seemed to be adapting itself, if that makes sense.

If a drug like FX-322 is released, are there any diagnostic tools currently available to make sure that it will actually work on the patient? Or is it just hit-and-miss? As if something like this is released I'd like to make sure that it would at least help me in some respect before I spent...

To be honest, I'm hopeful that both FX-322 and OTO-413 can be released together, as in my case I suspect that I may need both to fix my tinnitus problems. I severely doubt that one without the other will have any effect, but I don't know what caused my tinnitus in the first place either, due to...

I just received an e-mail stating when the results of the FX-322 trial will be released, if it's of any interest to anyone.

What I've been wishing for is something like "tinnitus house" where we could go, and have access to all the treatment and support we need without having to shop around ENT's to find a good one. Because if I could have accessed a good ENT from the start, I suspect that I'd be a lot better off...

I'd second that. Maybe also another interview with Frequency Therapeutics for updates on FX-322 and how's it going?

I think I have hyperacusis, or something was causing my ears to generate a pulsing-ringing sound in response to my computer last night, which does make me fret, as these drugs are still years away from release, and could be very expensive. I don't know. I just want this hell to end.