SoundCure Serenade Tinnitus Treatment System

I think the U of Iowa Tinnitus Clinic would not be after your $. Some of the private places I believe are.

 

Do you mean a Private Message on this site? You can do it when you go into your Inbox and 'Start a conversation'.

It seems the only people willing to prescribe 'off-label' are shrinks.

 

I tried the inbox to send you a message but apparently it didn't work.
Actually most of my prescriptions (off label) that I have used have been prescribed by a women primary physician.
She is very nice. The male doctor I have been seeing for 20+ years did not want to deal with tinnitus as he had about a dozen patients with it. The "shrink" ,I had seen in the past before my tinnitus started for some anxiety/depression issues.

 

I may be drifting off the subject too much. I think it was more for SoundCure reviews.

 

I have a alternate email if you need to discuss anything further or if I can be of any help. drh2@hickorytech.net

 

I had the SoundCure Serenade since 12-11-12 but have not used it much till recently. I didn't realize I had it that long till I got the bill for the audiogram and programming. They forgot to file my insurance so maybe part of that will be covered.
As far as using it, I was told to mainly use the #1 & #2 settings. the #3 & #4 are pretty much white noise. So far I don't have a real good opinion of it but I think time is up on returning it. Some have asked me if it was just a expensive masker, and I said I don't know. I thought the concept was to make the brain ignore the tinnitus and eventually it would diminish the T.
Too soon to tell for me and I will update in the future on this. In the meantime, I will still rely partially on drug therapy and good quality sleep.

 

For me it's a 30 minute drive. My wife works at the hospital. Have you been to the clinic before?

 

Hi,
No, I haven't but was considering going. Do you know much about the U of Iowa Tinnitus Clinic?

 

Have been there a few times. I guess what I need to know from you is how long have you had your tinnitus and by going there what results are you expecting? What is it that you think they can do? Thanks!

 

I have had it from about 2008 until present. I first thought it was caused by a ear infection and fluid in my ear on a airflight from Chicago to Minneapolis ,because it started in my left ear, the same one as the infection. It has got progressively worse ,although when I take Gabapentin + Klonopin sometimes it goes away only to be rebooted upon awakening as it is now. I have a fairly loud hiss in my head. Being a farmer I have had a lot of noise exposure, especially when I was using a used grain vac that had a very loud shrill sound.
When I was at Mayo in Rochester seeing a ENT doctor, he mentioned the Iowa City clinic. I just thought it would be another opinion on the course of action they think I should take. I talked to Dr. Richard Tyler briefly. Maybe they will tell me I have high frequency hearing loss and should try hearing aids. That was sorta my last resort. Have you had any luck going there? It now seems to be in both ears or maybe just my head.

 

I myself have had severe tinnitus(right ear)since 1999 that sometimes now shows up in the left ear. I'm fortunate to know a guy here in town that has severe tinnitus and is going to the clinic. He recently has been doing Neuromics(?),cost is close to $5000 and so far it has not helped him. I'm sure they also do TRT there. How was your talk with Dr. Tyler?Really would like to know what you talked about. I say a person should try anything at least once. So if you decide to go, any(and I mean ANY!!)questions that you have start making your list now.

For me what has saved my life is masking my tinnitus with music and the Moses/Lang Masking CD. I have no problem running around all day wearing headphones masking my tinnitus. I came down with tinnitus in 1999 and had to go for disability retirement in 2005. I really tried working through it but I got to the point where it was a challenge driving a car 103 miles a day. I was a rural mailcarrier and I simply could not focus on driving.

So I went and filed for disability thinking I had maybe a 20% chance of it getting approved. It was approved Feb. 2006. So I don't need to get up and go to work. My tinnitus still consumes me on a daily basis but at least with the masking I can turn it off whenever I want to. I hope I have helped you out. Any more questions just ask! Take Care. edit: My avatar is what the Moses/Lang Masking CD looks like.

 

Thanks J. Wing, I will reply more when my T subsides some.

 

Thanks J. Wing for the info. I am" Baak" as the Terminator said. Sorry you have such a debilitating T. Can I ask how you got your tinnitus or would you rather not say?

I really had a brief talk with Dr. Tyler. I asked him about Serenade and also about combining a group education session (1&1/2 hrs.) for $100 and visit with him. He said the Serenade might work for some people others not. I really didn't think they would transfer me to him directly. He sent me a step ONE to step FOUR brochure. I guess it is a protocol you must follow. Like you said it is probably worth at least one shot. I want to make it worthwhile the 4+ hour drive. I do like Steak & Shake restaurants ,but I also wanted to get as much info and appointments as possible. (We don't have Steak & Shake in MN) I went to them when I went to Shea Ear Clinic.

I am glad you got approved for disability, & maybe I am headed that way ,but I was hoping to manage or "cure" this condition somehow. I will try to get my questions ready if I go there. The other day I felt completely normal but then it came back. Maybe that is normal for tinnitus. Thanks for your help, and probably talk to you again.

 

Glad to be here with all the supportive info. Any other experiences with Acamprosate the drug used for alcoholism that was tested in Brazil?
Thanks

 

Hello Jeremy, Do you have bad T? From what I hear about that drug it is no better than a placebo for T. I tried it in 2010 and my head sounded like a jungle. You might want to put that one on the bottom of your list.

 

Jeremy, I made a post about Acamprosate the other day. If you search for it on the site, anything with 'Acamprosate' then you'll find the info.

 

Hi Karl (and Molan)

I tried the Sound Cure Seranade having high hopes last June 2012. My audiologist was one of the first to offer it in Las Vegas. I had to leave an $800 deposit and got to try it out for six weeks after which I would have to commit the remaining balance of the $2,000 price tag. I do not want to inpact anyone's hope for this device as I am speaking from my own experience. It did nothing for me but make my Tinnitus so very load that I could not even wear it.

There are four tones. The first and second are modulated with the second being the S0-tone that is supposed to give you relieve. The third and fourth tones are white and pink noise. The white noise sounds like rain while the pink sounds like static. The first tone sounds annoying the second or S-tone is even more annoying. In my opinion these two tones, especially the S-tone, or second tone is modulated in such a way that it sounds worse than the Tinnitus. In affect what it did was make my Tinnitus get louder and even change its own tone to sounding more like that annoying S-tone. When I discussed this with my Audiologist she suggested, after speaking with the company that created the technology, that I continue to persevere and listen to the device for longer period of times.

I tried that to but soon just could not do it. I was disappointed since i got the impression from reading the company's advertisements that you would receive instant relieve upon putting the device on and lasting relief after wearing it for a time. What I received was louder ringing at an uglier sound than my own Tinnitus, that is at the modulated sound. I never received any relief and in the end returned the device to my Audiologist and lost $200 of the original $800 after she returned $600 to me.

Again, I was very disappointed as I cried when I saw the youtube videos of this new device and read the company's adds. Please don't let me ruin anyone's hope. That is why i don't want to reply with my experience with this device but after reading Karl and Molan's comments above...i just had to share my own experience. Please if anything please remain hopeful, but keep what other's experienced in mind.

I am not very hopeful about any of the sound therapies as I also tried the one Molan or someone else mentioned above. The company is called Sound Therapy International from Australia. They sold me the Tomatis method for $600. It included earphones and a small mp3 player with 6 hours of classical music with alternating frequencies embedded in four albums. I listened to the device faithfully for the they claim that benefits with Tinnitus reduction take place between 3 and 6 months. I really did not receive any benefits , again, sorry for the poor news. And again, after the 5th month i could not continue with the device because it was sending my Tinnitus screaming soon after putting it on. During the first five months i received relief in that the classical music was nice and relaxing to listen to and masked my Tinnitus to a high degree. But by the six month, where I was hoping the therapy would reduce my Tinnitus as suggested it would happen in that 3-6 month window, my Tinnitus instead began screaming. All i received was another masker for a $600 price tag. Did it help my brain Molan? No! If you want something to help your brain and sleep, ill through in that Melatonin Ultra helps alot with quick sleep and restfulness for me. Unfortunately, sound therapy just doesn't do anything.

Carl, Molan....I would keep your eyes on the research being funded by the DOD and being conducted at Wayne State University. I think there we are going to find our meal ticket.

Peace brothers.
V

 

Wow,,,lots of spelling mistakes. Sorry guys.. I am very tired. V

 

Hi Viktor,

How did you get T? Just wondering if there's any difference using the Soundcure if your T is from acoustic trauma or not. Thanks.

 

hiss 1, My tinnitus just started one day as a very low hiss in my right ear. No loud noises at all. It's been quite the journey since 1999. Yes without the disability retirement I would have never made it. By the way we had a Steak & Shake here in Cedar Rapids but for some reason it closed. Don't worry there is one close by the hospital in Iowa City! Can I ask what town your from in Minnesota? We have been to the Mall of America several times and took tours of all the neat stuff in and around the area. Even went to a Twins came last time.

 

J.Wing, I am from rural North Mankato, about 3 miles out. Thanks for the info on the Steak & Shake location. I went to quite a few when I went to SHEA in Memphis TN in 2011. It was the first time trying S&S. I am having a bad day of T today. Do you find what you eat affects your T? I forgot to use my oral appliance for TMJD, maybe thats why, although I doubt it. I took 900mg GP & .5K earlier ,but Mister T does not want to let up so far. I think he needs a swift kick in the a**! Do you ever get a quiet day that gives you hope? Have you tried some of the seizure meds for T? I have been to quit a bit of Iowa but never Iowa City.

 

1 drug has worked for me. It's called Pramipexole. Did wonders. Made my tinnitus very soft. It worked for 2 months and 2 weeks then it wore off. I like how tinnitus tortures us.

 

Viktor-
Your description of your experience with SoundCure is helpful. I haven't read one positive statement about this product.

SoundCure is promoting itself as a tinnitus "suppression" device. That's quite a claim. I have read that hearing aids can actually suppress tinnitus. (Dichonics can suppress tinnitus, too, but seems to not be for sale!) Jastreboff and Hazell wrote, "It is interesting that in some patients tinnitus is suppressed as soon as hearing aids are put on. Although these patients obtain symptomatic relief from their hearing aids, they still complain about tinnitus when the aid is removed."

On the other hand, masking is meant to make tinnitus less noticeable. White noise generators almost drown-out the sound of the tinnitus. If you look at the below graph from "Tinnitus Retraining Therapy", it shows how masking should be set lower than the sound of the tinnitus. This makes the perceived "relative strength" of the tinnitus signal less.

I wonder, does SoundCure fulfill this function, as a tool for us to habituate to the sound?

 

I can answer this one! Yes, that is the aim of the Soundcure and the big deal about it is that the S-Tones should be able to 'mask' (partially obviously) at a level much quiet than normal maskers. So in short its less annoying as you can get that mixing point effect with the competing noise much quieter.

I have read that hearing aids can lower the T volume as soon as they are put on and Carlover does get this effect but I dont get it, surely not when you just put them on in the quiet? You must have to be listening to something?

My aids dont reduc it at all. Ive been told that this means my hearing loss is above 8khz.

 

Hi Karen,
I work for SoundCure here in the UK and I am responsible for introducing Serenade, our customised sound therapy system into this market. We are working with knowledgeable providers who have deep understanding of tinnitus. The S-Tones in the device have been researched and developed independently at the University of California - we are simply bringing it to market. We are slowly raising our public profile now that all of our providers are getting good levels of success with Serenade. S-Tones have been shown to be more effective (x4) than traditional stimuli used in sound therapy and you should be using the device at a level significantly lower than your tinnitus. In the short term you may experience some relief from your tinnitus but your tinnitus may be still be present, in the longer term you may experience short windows of relief for a few hours/days or even total suppression. These periods may increase over a period of time. Some patients report a significant reduction in their symptoms quite quickly, for others it takes more time. The key is to play the sounds at a very low level (tracks 1 or 2 are more preferable) and try to put your tinnitus in the background rather than to focus on it or the S-Tones being played.

Serenade can be programmed to 12Khz and we use extensively researched earphones. There is a dedicated algorithm within the device. Serenade was launched in the US last April (2012) and our Clinical Director is the former Director of The Tinnitus Clinic at the University for California where the S-Tones were discovered. The SoundCure Story on YOU Tube will give you a quick overview of how the technology was developed..

I have 18 years experience in the UK hearing care sector and I am excited to be involved with SoundCure as I know from my previous experiences of running a medium sized muti-practice hearing care company that we were missing a customised device for those who have bothersome tinnitus. I also like the company ethics - we want to work with good providers for the benefit of the patient..

Hope this has shared some additional background ..

Best wishes
Kevin Carlyon

 

hi Kevin

Thanks for contributing in the midst of our tales of woe.

I can see that you say there has been extensive research and obviously there is the cost of producing the device but it seems that the end product isn't much more than something that plays a few 'tones'.... certainly not expensive to mass produce?

Can you explain to all of us why the cost of purchase is so high please?

Jane

 

My update on it. It has not done a thing to reduce my Tinnitus. Was really hoping it would. I have not given up on it yet.

 

Kevin Carlyon, Is this the same device a Dr. Halik and a Mr. Petroff are associated with? Thanks!