Do You Consider Your Tinnitus a Disability?

[Bambi]

Ibuprophen , lorazepan?

OK, I checked ibuprophen, and they only listed "hearing problems". Lorazepam listed hyperacusis.

But I do know I´ve seen it on other medications.

 

[robinbird]

OK, I checked ibuprophen, and they only listed "hearing problems". Lorazepam listed hyperacusis.

But I do know I´ve seen it on other medications.

Ok. Thanks. Next time I will make sure of side effects. Thanks for the heads up. I think my T may be due to eustacian tube. Not sure. Getting a CAT scan.

 

[RoadToSilence]

We don't we do it then? I'd gladly donate £10 or more! And thanks for the information!

Completely agree. Seriously, would it be possible to set up a research fund for potassium modulators at T.T? Is this something that a large number of us would be willing to support?

Just brainstorming here, but could we create a fundraising campaign (for example with GoFundMe: http://www.gofundme.com/tour/) not just for TT members, but for us to share with others (family, friends, etc.) as well?

$60,000 sounds great, $100,000 even better. I really think this worth trying. Thoughts everyone?

Mods: Feel free to move this to a separate thread if it is too far off topic.

 

[Dr. Nagler]

All in all, yes, I think it is the person affected with tinnitus ways/possibility of coping with it that determines whether it´s a disability or not, to that person.

Thank you for your interesting opinion. I appreciate it.

 

[attheedgeofscience]

Shame really, as the ATA may have listened...Well, I may contact the BTA about keppra and see if they listen, I really wanna help people.

If you cut down on the number of messages you post and actually read the ones that were alerted to you, you will notice that your questions have been answered already:

The ATA was initially contacted as the organization to assist us with the informal trial i.e. getting a formal study undertaken in order to (hopefully) prove efficacy of Trobalt (and hence move the drug from off to on-label in the treatment of tinnitus). The ATA did respond to our request, but I would not describe their feedback as especially "welcoming" i.e. we were essentially told that we should anticipate self-funding (to some degree) and we would have to submit a formal proposal for the ATA to consider (which would then - probably - take a fair bit of time to process by the SAB). We were also told another "fact" (by a former member of the ATA) we would have to comply with in order to increase our chance of success (of the proposal being approved by the ATA). But I cannot disclose that "fact" in public.

The background for this decision is that the ATA does usually not engage in research by itself, but prefers instead to gather research proposals from leading scientists within the field of tinnitus research.

...

We intend to set up a new offline workgroup with members from the TT-community. The aim will be to write a proposal and include relevant findings from our informal study along with observations from recent scientific literature. The funding "requirement" from the ATA will also need to be discussed as the outcome of any study would ideally not just benefit the TinnitusTalk community, but essentially any patient suffering from severe tinnitus, anywhere in the world.

If the investigator with whom you are communicating is well-regarded and decides to do the study, by bypassing ATA you have saved yourself a year ... maybe more. Well done.

Dr. Stephen Nagler

 

[attheedgeofscience]

Just brainstorming here, but could we create a fundraising campaign (for example with GoFundMe: http://www.gofundme.com/tour/) not just for TT members, but for us to share with others (family, friends, etc.) as well?

See bottom of this post that was alerted to you just a while ago:

www.tinnitustalk.com/threads/team-trobalt-update-%E2%80%94-april-9-2015.9064/

I should also remind the tinnitus community that there is no shortage of "good ideas" from members as to why don't you do this and that. But when push comes to shove, no one is there to carry the burden.

Except Team Trobalt.

 

[NiNyu]

Imagine if all 6,000 of us [..] simply donated $10.00. We could fund a $60,000 project.

help us make legitimate headway toward finding a cure.

Let's do it! And invest in a clinical trial with HIFU on T.

 

[Danny Boy]

Danny Boy, with all due respect, it was you who mentioned the need for potassium modulator research back in post #67. That's what Trobalt is - a potassium channel opener. So either you want research into potassium modulators like Trobalt ... or you don't. I'm not trying to pick an argument here - just pointing out that the challenges in tinnitus research are not quite as black and white as they might seem.

All the best.

Sorry, what I meant is these drugs need to be on the market, trobalt isn't precise.. The main target is KV3.1.

 

[Bambi]

Thank you for your interesting opinion. I appreciate it.

Can I ask how you yourself feel about this?

 

[Dr. Nagler]

Can I ask how you yourself feel about this?

Sure.

I cannot speak for anybody else - only for myself. I was totally disabled by tinnitus that was absolutely SCREAMING in my ears 24/7. The sound was like a cross between a teakettle and a roaring jet turbine. On a loudness match it was louder than the tinnitus of 90% of individuals with tinnitus that is so severe that it led them to seek evaluation at a university tinnitus. And NOTHING could mask it. I spent most of my time in bed rolling from side to side holding my ears. On a very good day I might be able to accompany my wife on a very short trip to the grocery store - or drive my children to school. Not only did I contemplate suicide, I had even researched method. I was on enough drugs to put a small elephant to sleep.

Today I am well. I participate in all that life has to offer. Moreover, I do it with great joy and with great enthusiasm. But my tinnitus? My tinnitus has not changed at all. It is still absolutely SCREAMING in my ears 24/7. The sound is still like a cross between a teakettle and a roaring jet turbine. On a loudness match it is still louder than the tinnitus of 90% of individuals with tinnitus that is so severe that it led them to seek evaluation at a university tinnitus. And NOTHING can mask it. So my tinnitus has not changed at all. What has changed is ME! And while my tinnitus can still distract me - totally unpredictably - it causes me little, if any, distress.

So, Bambi, when you post: "I think it is the person affected with tinnitus ways/possibility of coping with it that determines whether it's a disability or not," strictly from my personal experience, I would have to agree with you.

 

[Bambi]

Sure.

I cannot speak for anybody else - only for myself. I was totally disabled by tinnitus that was absolutely SCREAMING in my ears 24/7. The sound was like a cross between a teakettle and a roaring jet turbine. On a loudness match it was louder than the tinnitus of 90% of individuals with tinnitus that is so severe that it led them to seek evaluation at a university tinnitus. And NOTHING could mask it. I spent most of my time in bed rolling from side to side holding my ears. On a very good day I might be able to accompany my wife on a very short trip to the grocery store - or drive my children to school. Not only did I contemplate suicide, I had even researched method. I was on enough drugs to put a small elephant to sleep.

Today I am well. I participate in all that life has to offer. Moreover, I do it with great joy and with great enthusiasm. But my tinnitus? My tinnitus has not changed at all. It is still absolutely SCREAMING in my ears 24/7. The sound is still like a cross between a teakettle and a roaring jet turbine. On a loudness match it is still louder than the tinnitus of 90% of individuals with tinnitus that is so severe that it led them to seek evaluation at a university tinnitus. And NOTHING can mask it. So my tinnitus has not changed at all. What has changed is ME! And while my tinnitus can still distract me - totally unpredictably - it causes me little, if any, distress.

So, Bambi, when you post: "I think it is the person affected with tinnitus ways/possibility of coping with it that determines whether it's a disability or not," strictly from my personal experience, I would have to agree with you.

Thank you for your answer, Dr. Nagler

I´m sorry to hear your tinnitus is so bad, but I think it´s really good to hear that you´ve found ways to live with it

 

[Dr. Nagler]

Thank you for your answer, Dr. Nagler
I´m sorry to hear your tinnitus is so bad, but I think it´s really good to hear that you´ve found ways to live with it

But my tinnitus isn't bad! It's very very loud - but it isn't bad. It used to be incredibly bad, but it's not bad any more. And the reason it's not bad anymore has nothing to do with my tinnitus, which hasn't changed at all. It has to do with ME.

That's the point I was trying to make.

It's not a very popular point to make on a board such as this one, which is why I was speaking from my own experience only.

 

[Bambi]

But my tinnitus isn't bad! It's very very loud - but it isn't bad. It used to be incredibly bad, but it's not bad any more. And the reason it's not bad anymore has nothing to do with my tinnitus, which hasn't changed at all. It has to do with ME.

That's the point I was trying to make.

It's not a very popular point to make on a board such as this one, which is why I was speaking from my own experience only.

I see I chose a bad word. I totally agree with you. The correct word is "loud", not "bad". The connotation of words sometimes stick in a bad way. Though me myself also think of my tinnitus as loud, I often find myself thinking the word "bad", though what I actually mean is "loud" *phew*

To sum up; I totally agree.

 

[Champ]

As for raising awareness--well, Tinnitus Talk has 6,000 members. Imagine if all 6,000 of us posted about Tinnitus on our Facebook walls, talked about Tinnitus on Twitter, ran fundraiser 5ks on behalf of Tinnitus research, or if all of us simply donated $10.00. We could fund a $60,000 project. Although I generally agree with @Dr. Nagler that focusing on one's own misery might just make one more miserable, focusing our energy on raising awareness (and, especially, fundraising!) could make us feel better AND help us make legitimate headway toward finding a cure. And if that means funding potassium modulator research, well, I'm sure some researchers would love to have $60k to help pay for equipment, staff time, etc.

Imagine $10 from each of our members! What a difference that would make!

Just a thought. Now I'll stop taking us all off the topic of this thread.

As bad as it sounds, I am trying to not broadcast my struggles with tinnitus to everyone I know. It's hard enough to have it, and it has a big impact on my life, but I don't like pushing that negative energy onto others.

I have donated and will continue to donate money to these causes along with helping work behind the scenes, but not everyone is comfortable with broadcasting awareness of this conditions .

 

[Brianna]

It has a significant impact on many of us. That said, do you consider your Tinnitus a sort of disability?

I answered your poll with a Yes because you didn't have an option that says, "Depends." (Not the adult diapers...)

I'm not functional enough to ride my motorcycle today due to lack of sleep. If I am okay when I wake up, it's typically a reasonable start for the day. I know if I have house work to do, I get it done sooner rather than later because I may not be okay later. I have to push through fogged thinking - not something one can afford to be working in info tech in the north.

T impedes what I used to be able to do. My spreadsheet with my tax info is a great determiner that shows how effected from T and the cochlear implant I am. I didn't miss a lot but compared to prior years, it was sloppy. Lessons learned and it won't happen next year. My work in info tech would have gotten me fired had I worked with part of a brain. In that sense, it's a disability.

 

[Brianna]

As bad as it sounds, I am trying to not broadcast my struggles with tinnitus to everyone I know. It's hard enough to have it, and it has a big impact on my life,

I'm past the implant stuff and now just wear it on any shirt I have rather than hiding it. I only make my T known to people who see me more frequently. So, it's less than a handful of people in my life. My neighbors know about the implant, they don't know about T.

 

[robinbird]

Completely agree. Seriously, would it be possible to set up a research fund for potassium modulators at T.T? Is this something that a large number of us would be willing to support?

Just brainstorming here, but could we create a fundraising campaign (for example with GoFundMe: http://www.gofundme.com/tour/) not just for TT members, but for us to share with others (family, friends, etc.) as well?

$60,000 sounds great, $100,000 even better. I really think this worth trying. Thoughts everyone?

Mods: Feel free to move this to a separate thread if it is too far off topic.

I just gave a donation to eye floaters this way. I would give a donation and more than $10!

 

[ruben ruiz]

Dr. Nagler, I was habituating doing well then the T/H went up a notch. Im really having a difficult time dealing with the new levels. I dont know, have people who have had chronic T and Insomnia gotten better? I think part of my problem are the ototoxic meds Im taking Venlafaxine for depression and Trazadon for sleep. My huge problem was I was unable to sleep on my own for two months. I couldnt no longer deal and I got meds. I really with a having a hard time with 5-6 pm spike. I dont know if its the Venlafaine as thats what time I take it. I would hope theres a chance for me to get better. Im fighter but the new levels are taking there toll. Thank you.

 

[Dr. Nagler]

Dr. Nagler, I was habituating doing well then the T/H went up a notch. Im really having a difficult time dealing with the new levels.

I do not view habituation as "dealing with" anything. But regardless of how you define it - you did it once, so you can do it again.

I dont know, have people who have had chronic T and Insomnia gotten better?

Yes.

I think part of my problem are the ototoxic meds Im taking Venlafaxine for depression and Trazadon for sleep. My huge problem was I was unable to sleep on my own for two months. I couldnt no longer deal and I got meds. I really with a having a hard time with 5-6 pm spike. I dont know if its the Venlafaine as thats what time I take it. I would hope theres a chance for me to get better. Im fighter but the new levels are taking there toll.

Sounds to me like you are trying to be the captain, the first mate, and the entire crew of your own ship. Sometimes it helps to have professional guidance as you try to sail through particularly muddy waters. You live in Tucson. Why don't you make an appointment with Dr. Alan Rohe in Tempe. He teaches the tinnitus course in the Doctor of Audiology program at AT Still University in Mesa. I know him well and feel very comfortable recommending him.

stephen nagler

 

[marqualler]

As far as BTA funding potassium modulator research, here's a study they funded in that exact role:

http://www.tinnitus.org.uk/role-of-the-5-ht-system-in-tinnitus

I have donated and will continue to donate money to these causes along with helping work behind the scenes, but not everyone is comfortable with broadcasting awareness of this conditions

I think that is a perfectly valid perspective. I probably got overzealous talking about fundraising for research given the realities of many people's individual wishes. But I think the point I was trying to make is we are uniquely situated as a large online community to make a big difference for ourselves and the millions around the world with the same condition. The good folks at BTA and ATA want the same thing, too.

 

[Dr. Nagler]

As far as BTA funding potassium modulator research, here's a study they funded in that exact role:
http://www.tinnitus.org.uk/role-of-the-5-ht-system-in-tinnitus

I may be totally out of touch in the above regard, but I was unaware that the 5-HT system had anything to do with potassium modulator research.

 

[stelar]

For me, no. For others, I can certainly understand how it can drastically affect one's quality of life. Been there, done that, and fortunately I habituated. But if one fails to habituate, I understand how the long-term effects can be debilitating.

If you were able to habituate to your tinnitus then it was not catastrophic tinnitus.
Again, people like you trivialize this condition at its most severe levels.

 

[Stink]

For me, no. For others, I can certainly understand how it can drastically affect one's quality of life. Been there, done that, and fortunately I habituated. But if one fails to habituate, I understand how the long-term effects can be debilitating.

if you was in charge of tinnitus research and awareness we would be doomed.........
you have mild tinnitus clearly

 

[stelar]

But my tinnitus? My tinnitus has not changed at all.

Really? What about your "spike" that put you in a tailspin after 20 years of your unchanged tinnitus?
I guess it has gone down back to baseline then after using TRT maskers.

 

[marqualler]

I may be totally out of touch in the above regard, but I was unaware that the 5-HT system had anything to do with potassium modulator research.

Whoops--my mistake. As I understand now, the study relates to serotonin--not potassium modulators. Although I have learned a lot more about tinnitus research in the last six months than I ever thought I would in my lifetime, I have yet to earn a Ph.D. in neuroscience.

That said, the point I was trying to make is that a) the BTA, as it stands, does have an interest in research pointed toward curative drugs, and b) we as a community (both within Tinnitus Talk and in partnership with other interested parties) have a great opportunity to make a difference in making that happen.

 

[Dr. Nagler]

[Responding to a post from @pef] If you were able to habituate to your tinnitus then it was not catastrophic tinnitus.

I see people with catastrophic tinnitus all the time. And most of them habituate very nicely. Some don't; that is true. But the vast majority do very well indeed. As I have written on a number of occasions: What it takes is Strategy, Determination, Flexibility, and Insight.

You are certainly entitled to your opinion, stelar, but in this case the reality argues strongly against that opinion.

 

[Dr. Nagler]

Really? What about your "spike" that put you in a tailspin after 20 years of your unchanged tinnitus?
I guess it has gone down back to baseline then after using TRT maskers.

I habituated to my new level of tinnitus fairly quickly thanks to the devices. My tinnitus has not in any way returned to baseline. I have, but not my tinnitus.

 

[linearb]

I habituated to my new level of tinnitus fairly quickly thanks to the devices. My tinnitus has not in any way returned to baseline. I have, but not my tinnitus.

are you still using the devices?

And what would you say to someone like me, for whom my personal "baseline" was to be completely riddled with anxiety to the point of being borderline non-functional for years prior to acquiring worsened T? My own assumption has been that I either find a different/new way of dealing with that stuff, or accept that my life is terrible. The former continues to elude me, but surrendering to the latter seems horrid.

 

[Dr. Nagler]

are you still using the devices?

No, I stopped a few days ago.

And what would you say to someone like me, for whom my personal "baseline" was to be completely riddled with anxiety to the point of being borderline non-functional for years prior to acquiring worsened T? My own assumption has been that I either find a different/new way of dealing with that stuff, or accept that my life is terrible. The former continues to elude me, but surrendering to the latter seems horrid.

Well, it depends on the degree to which your tinnitus itself affects your life. If your tinnitus does not affect your life in any significant way, I would not do a thing regardless of how loud your tinnitus might be. On the other hand, if your tinnitus affects your life significantly, then if I were you I would do exactly what I tell every other individual with severe intrusive tinnitus to do - anxiety or no anxiety. And that would be to seek out the advice of a truly knowledgeable and experienced tinnitus clinician who can personally evaluate you and figure out what treatment program would best suit your situation. That's what I myself did back when I was suffering so severely in the mid 1990s. And it's what you would do right this minute if you had a cardiac condition that markedly affected your life. Or a pulmonary condition. Or a rheumatological condition. Or a hematological condition. Or an orthopaedic condition. Or a renal condition. Or a gastrointestinal condition. I mean, you might try a few stopgap measures that you picked up from friends, from books, or from the Internet. But if they didn't get the job done in relatively short order, then you'd get professional help. Well, tinnitus is no different in that regard. The only problem is that there are fewer truly knowledgeable and experienced resources. And that is definitely a real problem, but it's not an insurmountable one.

That's how I see it, anyway.

stephen nagler

 

[pef]

If you were able to habituate to your tinnitus then it was not catastrophic tinnitus.
Again, people like you trivialize this condition at its most severe levels.

Trivialize the condition? Hardly. Read my posts. When I got tinnitus I was a wreck. I thought every aspect of enjoyment in my life was over. I could not sleep, I could not concentrate, I was a walking zombie.

This is a support forum. People come here also to hear about success stories. It is unfortunate you feel the way you do, but your attitude hardly gives hope to people who are having trouble dealing with tinnitus.