Discussion in 'Treatments' started by Tha_b_man, Mar 28, 2012.
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Yes, it sounds like a lot of money for something that may not work, or make it worst!
My point that I was trying to make was that 85% of tinnitus patients exaggerate their tinnitus loudness LOL - thinking its loud when in fact its not as loud as they think it is.
Seems to me you are basing your conclusion on an uncontrolled internal study funded by a device manufacturer. It may fit in with your view of things, but as far as I can tell, it's no more than an opinion.
I've used SoundCure for two days and already dislike it. It doesn't bring instant relief if anything it's annoying to have those buds in the ear and still trying to struggle to get relief. The tones 1-3 are awful and tone 4 is like a fan but have to put it up high to hear. I slept the first night with it at a higher level on tone 4 and had to call my audiologist the next morning because the sound was louder and I had a hard time managing. Not sure if I want to keep the two week trial. Can someone please show me one person that has had extreme success?
I have never heard of sound cure.
Can you not wear a different ear piece that you find less irritating?
You will need to persist. I dont think 2 days is long enough to guage if this is going to assist you in habituation.
I am in the midst of deciding if ill go with neuromonics or audionotch. I was told that with both of these methods, t can change. I imagine this is what you want; isnt it evidence that the therapy is assisting you with postitive plasticity?
Did your audiologist test you for reactive tinnitus? if this is the case, you may need to take this into consideration when trialling your product. Remember, sound therapy isnt a cure. As I understand it, it is a means of suppressing your t; diminishing your perception and disturbance of your t.
Let me know how you get on.....but i would stick with it......
Deb, I don't understand. Why should Linda stick with an expensive treatment protocol that produces a sound she dislikes, that seems to be aggravating her tinnitus, and that has never been shown to be effective in any independently verifiable studies? As far as I know, the only studies demonstrating efficacy are those that were funded by SoundCure. And if that's not enough, doesn't the use of the word "cure" the name itself cause some concern? You yourself noted that sound therapy is not a cure - so why call it one???
i didnt call it a cure!
No, you didn't. I was referring to the name of the product - SoundCure.
I've always found the name to be quite insulting. Not very well chosen for a device that is supposed to be sold properly, rather than by a Thomas Coleman or other shady internet source.
Well I think it is difficult to measure a fake noise... which can be exaggerated by lack of sleep, anxiety and so on.. at best we can give an approximation.... to another real sound... I can make my left ear ring by extending my jaw.... and it always rings at the same level, I use that as a base line for my right T ear. I noticed if I put forward pressure on my scalp my left ear rings too... real circus show right..?... but I think what the Dr. at the University of Michigan said (GO BLUE) is right, the face and neck get over sensitive to impute when hearing is lost and to help fix it is to stimulate the impute.. just a random thought...
And more than insulting, it really doesn't pass the "smell test." If it's not a cure, why call it a cure?
Regardless of what you think of the name, it is good that someone is trying to develop devices to mitigate our tinnitus. We should encourage them.
I had occasion to chat on Facebook with a SoundCure employee. She was very nice. She readily admitted the device doesn't work for everyone. But it was clear she hoped it would work for me, and she was genuinely disappointed when it didn't.
This Serenade is not easy to set up. You and your audiologist have to get it exactly right at the time you are fitted with the device. I have doubts my audiologist and I fully understood the setup process, resulting in failure. I know I should try again, now that I have a better understanding, but I didn't like the Serenade's sounds enough to do so.
I agree that it is good that folks are trying to develop devices to mitigate tinnitus.
It's when they call their devices cures knowing all the while that they do not cure and then try to sell them to a public truly suffering from tinnitus and therefore hungry for cures that I have a problem. Don't you?
No, I don't have a problem with it. These folks are spending money doing R&D in an honest attempt to create a working device. The name is just the marketing department run amok.
I do have a problem - and a serious one - with all the homeopathic "remedies" out there which purport to mitigate tinnitus or anything else. That is simply snake oil, and much more deserving of your anger than a company like SoundCure.
The name is a LIE. There is nothing honest about any of it. You think the R&D folks didn't have veto power over the name? Hell, they hold the patent!!!
Trust me, I've got enough anger to go around - and that definitely includes homeopathic snake oil, scams, and ripoffs.
Perhaps you are not familiar with Stringplayer's Second Law:
"The degree to which a person will apply common sense and logic in search of relief from a malady is inversely proportional to the square of that person's misery and desperation."
As far as I'm concerned, those who would take advantage of another's misery and desperation for their own financial gain deserve to spend eternity right along side Judas in the Ninth Circle of Hell.
As the discussion has hinted in the thread above, the current business model for sound-based treatments of chronic tinnitus is not optimised at present. On the one hand, the R&D is expensive and of course IP needs to be protected, on the other hand paying hundreds of pounds/dollars on an mp3 player seems like a rip-off. Meanwhile, you have geeky types trying to reverse-engineer the algorithms and provide a free solution. There has to be a middle-ground business model out there. A hardware-based approach to protecting your R&D IP is not the way forward. There are in fact easier ways to make money and help tinnitus sufferers. Here's my suggested business model:
1. Sound Cure/ANM-type companies should focus on the software, not the hardware. We all know the hardware is basically an MP3 player with a few nobs on. This can easily be replaced by an app-based solution, simplifying your business.
2. The price point would need to be around $50 max (that's at the top end of apps these days, but people would pay).
3. Sales however may well be huge - in the tens of thousands if effectively (and honestly) marketed, rather than the low thousands for current hardware-based solutions.
4. The app could be rolled into a consulting-treatment package (allowing audiologists/ENT consultants to remain relevant) but also be sold as a standalone app (with the usual caveats that its best to use the device with expert support etc.)
There's therefore an opportunity for a SoundCure type outfit to repurpose its R&D and dive into the app game. I'm hopeful that this is an obvious opportunity and its only a matter of time...
The alternative bottom-up approach is for the geeks (some of whom inhabit these pages) to continue their own grassroots R&D, apply for their own funding (or get an angel investor) and buy-in their own audiological expertise.
A final thought: people are expecting quick fixes from sound treatments. From all I've read, it doesn't work that way and requires a medium to long term expectation horizon - months of listening to boring noises, not hours or days!
Peace and quiet to all fellow sufferers!
Thank you for all that have replied. I stopped using SoundCure two days ago. My sounds have changed and had a terrible time for two days with static and a higher level noise than before I started. I've cried for two days hoping this is just temporary. Can this device actually make you worse rather than better? I'll give my audiologist a call tomorrow not sure if she will know the answer. Also tried SoundCure based in San Jose but their office was closed today as well.
@Linda Marie It is possible it can make you worse. The thing with sound therapy is that we all have a different tolerance level to different types of sound. What sounds pleasant to some is irritating to others.
Done right it should be completely customised to you and what you like, and delivered in a way you like, it sounds very generic from what you've already said.
I can't use ear buds at all, they make my T flare up and I hate the feeling of my ears being blocked - so I use open headphones, they may be a better option for you. I just got a pair (lovely christmas present) of Grado SR80's, they work very well with small devices. Open headphones sit on top of your ear and don't block much external sound, for me they feel much better and natural.
It sounds like you won't be keeping the device, but if you do then there's no reason they can't offer you a better headphone.
I just heard from my audiologist and the SoundCure rep is seeing her tomorrow. She will be discussing my case with her. They may want to reprogram the device. At this point not sure what I want to do. Thanks for the advice on the Grado's. Did you ever use any type of masking device? I'll have to let you know what I decide to do.
I used maskers about 8 / 9 years ago, white noise generators that sat in my ears. I hated them, they slightly muffled my hearing and felt very uncomfortable. A bit like ear buds but not quite as bad. They've advanced a bit now and don't block your ears as much but I'd rather make my own sounds to my liking, using audio kit that I like the sound of.
Even though they look like they sound similar on the frequency response charts, headphones are massively different. I've gone through loads of pairs to find ones I like, lots of expense. If they offer you headphones they should definitely start the 2 week trial again so you have time to evaluate them and the device properly.
I don't care much for this device, but hopefully it helps you. One of the things about using a treatment is that it can focus you much more on your tinnitus, you're far more aware as you're waiting for a response - is it better, is it worse? That should level off though and by the end of 2 weeks you should know if it's good or bad for you.
Appreciate your feedback. Well I'm back on SoundCure on a much softer sound. I'm using track 4 which is taylored to my frequency (white noise). I promised my audiologist that I would try it out for a week or so. Your advice about leveling off by end of two weeks makes sense so that's the plan. What a great idea using headphones. I assume it will help with clearer sound. I don't particularly like the buds either. I noticed you're a Director what does that mean on this site? Can I ask how you acquired your T?
Let's see how the new tone works then, keep the thread updated.
The Director thing is relative to our new website Tinnitus Network, basically a partner information hub to this forum. We're starting a business to fundraise to develop it as it's an expensive thing to do. So we are Directors of that business. At the minute it's a social enterprise but we may change to a cooperative or some other community style business model - something that keeps the freedom of being able to review and comment on everything.
I got my tinnitus after a bout of flu, with an ear infection that blocked ears for over a week. Heard a low noise and it stayed with me. I was told that I had a slight dip in my hearing that caused it, probably from clubbing, years of loud music and working on construction sites without properly protecting my ears.
I fine certain high frequencies excite mine (T).... its like to is reacting to the noise.. the brain can still hear it at some level I guess and also starts firing more neuron's.... but there are times I have to walk away so it settles down.. maybe this is what you are experiencing... most of the time anything other than sleep or stress and it stays the same....
Mine was the same thing.. but no flu, just blocked ear..(one)... and I got the T.. same thing w/the hearing, a slight dip... at the high end..... but I too worked factories, ect.... it happens.... I also had pulsating T.... OMG...OMG... and a Flutter..... when its all said and done, thank GOD I got rid of the PT, and Flutter.... habituation would be a bitch.. and God bless everyone with them, I know their pain.....
Good luck with your Tinnitus Network. I will keep you posted. My T came with TMJ not sure how that happens could be tight muscles around the jaw. Some good days like today (very quiet). Other days hard to handle. Haven't had need to use my device today. I may continue the SoundCure on my bad days. I would really like to habituate to the sound and not use a device, but believe it's too early since most people seem to habituate within a year or so. Would like an opinion on this. Thanks Steve and Piper.
If you only need to use the device every now and then, and if it is more as a masker, then I would save your money and get some good headphones. Then download some sounds you like onto a music player, that will divert your attention away just as well and save you a lot of money.
Does your tinnitus feel better after using it, or do you feel like it's more of a distraction thing?
I have a good selection of sounds and I can send any across to you if you want to use your own player, and there are plenty on the net. Larger files are no problem as I use a free site that lets you upload and download up to 2gb.
Hi Steve, funny thing I was going to ask you a similar question. So what is the science behind the following: a sound generator like SoundCure, a masking device like Widex "Zen2Go" uses random soothing harmonic tones to help relax and manage the effects of T or my ipod mini to divert attention. My confusion is the end result the same? The SoundCure is $1900 covers device and trips to the audiologist. Honestly, I don't like the S-tones or white noise produced for me. I've been wanting to look into the Zen2Go on a trial basis and haven't priced it yet. You may want to look at the Zen2Go and see what you think.
If you have some good selections of sounds I would appreciate it but not certain which those would be. My T is a high pitch frequency in my left ear.
I haven't heard the s-tones before so I can't say much about them, but the zen is hugely overpriced in my opinion. It just plays a random wind chime sound, and a couple of others I think, I can make that easily and you can use an iPod, you'll save a fortune.
If you can find something similar as a sound that you like you can use it in exactly the same way and then it's customised to you. Otherwise you're stuck with their programmed stuff.
How does this video work for you? I made it for my high frequency, I play it like a masker at a level where I can just hear the tinnitus, and as it's random I find I can ignore it and put it into the background easily so it doesn't distract me.
Bell melody for tinnitus - random background noiseWatch this video on YouTube
Hi there, Thanks so much you're sweet! Because I have a high frequency tone in my left ear the pitch sound is too high for me. My T doesn't like it. I'm still experimenting but it's not an easy find. Right now I sleep with ocean wave sounds listening through sleep phones. I also like hearing the wind but metal chimes are too high. So you still need a masker after so many years? BTW I've stopped the SoundCure I don't like the tones. Thanks for the advice about making my own sounds. It's still a work in progress. Not sure what I will do next.
I wish I could listen to that. My tinnitus is also triggered by sound and every ding sounds like a ding with high pitched static attached. I wish I could listen to any sound including my own voice.