Management of the Tinnitus Patient Course - University of Iowa

If you read up about retigabine, it's certainly not without side effects. Changes in eye color have been noticed. If you do decide to go that route, be sure to have a proper consultation with your father in law (I'm assuming he's a practicing physician?). We of course would love to hear any experiences you have.

@J. Wing I'm going to be there on Saturday. I may head over on Friday night and grab a hotel room though, as I hate waking up early and driving. I'll be able to make it there a little earlier then. I wanted to make sure I hear Dr. Gans speak, and I always like hearing anything that Dr. Tyler at Iowa has to say too. Other than that I was just going to stick to the conference schedule. I'll probably take a break to grab some lunch at some point, but that will be about it. I registered as a patient, how did you register?

 

Patient. From the looks of things I might go both days. Theres a little here and a little there I want to hear about.

 

@J.Wing, I moved our above posts to this thread because they didn't really have much to do with the Autifony thread. Thanks!

 

What a waste of resources!
They should put that money into research and fining a cure!
Enough of bla bla bla especially from those who don't know what's it's like to have t, enough of management!!!! I don't want to manage, I want my life back! We need something that either lowers the volume or stops this *#!% all together.
That's my opinion!

 

Hudson, I heard you went to the conference. I went both days but could not stay the whole time. I looked around for you on Saturday but did not see you. I was sitting about 2 rows from the back on the left side. What did you think of it?

 

@J.Wing,

Sorry I missed you. I did not get your name before we went. You must have been in front of me a little bit. For the second day I was in the very back, next to @Dr. Gans, as she was the only one I recognized up until that point.

 

So great meeting folks at the Conference in Iowa. What did you think of the Conference? Did you learn anything new about tinnitus? What were your impressions??

 

I love that this conference is about "tinnitus management"... I doubt there were many AIDS management conferences going on in the 1980s.... this is the mind frame of the tinnitus establishment- its pitiful... no wonder there are no pharmaceutical treatments yet

 

It is unfortunate that there are no medical cures for tinnitus and I just worry that if there is a medical cure or pill that you can take for tinnitus in the future, it might have side effects that would be even worse than the tinnitus itself. Until there is a cure, management is the place where professionals have placed their focus. It is frustrating but trying anything and everything that may bring you even a bit of relief is the way to go for now.

 

I want a cure as much as the next person. But the reality is that many medical disorders (especially those that like chronic tinnitus are connected to the brain, such as Alzheimer's or Parkinson's) have no cure after decades of research and tons of funding.

So in the meantime, I am happy to learn all I can about new and more effective ways of managing my condition so I can live my life as fully as possible. If @Dr. Gans, @Hudson and @J. Wing have some news out of the conference they can share, or some links they can point us to, I would appreciate it. I am glad some ENTs and other professionals, instead of dismissing their patients with a "I can't help you," want to take the time to learn how they can help us. Those are the people I want as my doctors.

 

No, I respectfully disagree. This is why we have clinical trials. And, as you know, tinnitus severity also ranges from mild to catastrophic; as such, even treatments with more severe side effects will help some people.

That said, I'm a big fan of all therapies that help achieve habituation. Dr. Gans' program is excellent for people who can learn how to meditate. Mindfulness has a long history in helping people. So does does CBT and TRT. All these programs are great. I only wish insurance covered more habituation therapies. To my knowledge, insurance covers none--in the US, that is. So the insurance industry is another barrier to more people taking personalized therapies--whether it be CBT or TRT, etc.

For people with chronic tinnitus, moreover, it is possible that sufferers will still utilize habituation therapies like Dr. Gans in addition to other treatment modalities. My feeling is that chronic tinnitus may be a condition that has to be managed, rather than cured.

But, of course, we all still want a cure!

 

I disagree as well, even though you work with tinnitus patients that quote almost makes me think that you don't really understand the level of suffering caused by significant tinnitus... I'm doing better than I was now, but if someone gave me the choice today whether my tinnitus could be cured and I would be guaranteed to never hear it again or I could have my legs amputated and spend the rest of my life in a wheelchair ... I would seriously have to think about it... and I know that there are members of this board who would take that deal in a second... So drugs with side effects... who cares

 

Very true. You almost have to be a sufferer to understand how torturous it can be. I would sooner be in prison than live with head noise. Of course I wouldn't want to commit any crime, but knowing it would be over in x amount of years would be very comforting.

They (Autifony) are trying to target a certain part of the brain with increased neural activity ( the Thalamus I think) with minimal side effects, so we'll just have to wait and see how the trials turn out. Until then, like @Dr. Gans said, we'll have to try anything and everything that may bring us even a bit of relief.

 

I would truly take nearly any conceivable side effect over having chronic T. But thank you sincerely for helping us Dr. Gans...We need more Dr's that help T sufferers.

 

Thanks for all of your comments. It is baffling and frustrating for so many people that there is no cure yet. But new management programs like Mindfulness Based Tinnitus Stress Reduction (MBTSR), which I am happy to talk more about, focus on putting the responsibility for healing into the hands of the person with tinnitus (while hoping, like all of you, that someday there is a way to change the brain to cure tinnitus without causing more problems). Essentially, mindfulness based programs stress how you, with practice and consistency, can use purposeful attention to re-wire your own brain so that the focus of attention is not solely paid to tinnitus. The more evolved part of our brains (pre-frontal cortex) with its ability to use reasoning, can convince lower more unconscious parts of our brain (Limbic system--midbrain--amygdala) to relax and see tinnitus as a meaningless sensation rather than a body sensation that the brain must keep on alert. By stabilizing the brain (as can be done with the hard work of attention control exercises like meditation) we can then use reasoning to convince ourselves that the tinnitus signal can really just be let go of, much like we can let go of white noise in a room. This is simple but NOT easy. Like deciding to go on a diet, it takes discipline, time, patience, and consistency. Until there is a 'cure' even if these management strategies helps to relieve even a bit of the suffering (enough so you can at least function day-to-day) it certainly is worth the commitment. It's not that there is no possibility for a cure some day, but that day has not happened yet. So in the meantime I think it is important to look at ways in which we can help relieve our suffering on our own. I'd love to hear your thoughts...

 

I am neither endorsing nor challenging the following video on MBTSR by Dr. Gans; I am simply posting it for those who may be interested.

Jennifer Gans Tinnitus Perception Shift: MBTSR...

 

@attheedgeofscience Good post! Several months ago, I looked into mindfulness, but could not "get into it." That said, some people may find the technique therapeutic so I'm going to post the results of my research. Please note I did not try all these things, but I looked at them.

Dr. Gans course is based on the work of Jon Kabat-Kinn, Ph.D. He is the developer of MBSR (Mindfulness Based Stress Reduction). Of course, Dr. Gans did adapt his methods for tinnitus; hence the MBTSR name. But there's nothing magical here. You can adapt it yourself if you can't afford Dr. Gan's course. Below are links to a book and workbook that should help someone create their own DIY program.

http://www.amazon.com/dp/1604076585/

http://www.amazon.com/dp/1572247088/
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Please know that meditation is very difficult. I've never achieved a meditative state, even though I tried a few times. For people who want to try meditation, it might be useful to try the following CD, apps, and gadgets:

http://www.amazon.com/dp/1591793599/

https://itunes.apple.com/us/app/breathing-zone-relaxing-breathing/id369838631?mt=8 (A lot of mindfulness does focus on breathing and this app is kind of cool. I like it, though I don't like meditation.)

http://meetmuse.com/
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https://medicine.uiowa.edu/oto/educ...nagement-tinnitus-patient-course/registration



https://medicine.uiowa.edu/oto/site..._uploads/Tin Hyper Conf Brochure 2017 v30.pdf
FYI 2017