Tinnitus Classification for the General Public

[Jazzer]

I'm out of this thread now, it's draining what little energy I have left nowadays.

Good night guys and gals.

"QUITTER !!"

(only kidding)

 

[Autumnly]

I did... I proposed an actual no nonsense tinnitus scale and trying to raise awareness that way.

What else do you exactly want me to do?

You could make a video for Tinnitus Week 2019 and talk about severe tinnitus; that could actually reach people and get the message out. Tell people you're only able to cope because it's not severe anymore. But posting on here alone will never change how tinnitus is being seen by the general public.

Attacking Hazel was absolutely unnecessary. You could have offered to write a section about severe tinnitus or said you'd like to work with them to give some constructive feedback. Did you ever think about offering your help for this guide? Nope. You had to immediately attack them. Seriously, I'm grateful more people are talking honestly about tinnitus but I'm not so delusional to think that's actually helping us find a cure. You could do way more. I could do way more. You yourself said your tinnitus isn't that bad anymore. Write that book. Make some videos. Contact associations and doctors and what not. But stop attacking the people who are actually doing something.

 

[Jazzer]

If their help is to create watered down pamphlets about coping with this life destroying disease we don't need their help.

We need a strong message to the world that tinnitus needs to be cured above everything else right now or people will keep suffering horrendous torture and killing themselves day in day out.

End of. That's the message. Clear and simple.

I absolutely agree Bam.

Could you write that message.

 

[Ed209]

If their help is to create watered down pamphlets about coping with this life destroying disease we don't need their help.

We need a strong message to the world that tinnitus needs to be cured above everything else right now or people will keep suffering horrendous torture and killing themselves day in day out.

End of. That's the message. Clear and simple.

To be clear, this is a small example of the message I promote:

In the above I linked to 4 suicide articles.

Again, this is a small snapshot, and I pay to get the message out there. What Tinnitus Hub are doing is on a grand scale and has the interest of every sufferer at heart. So, when I come on here and see their efforts rubbished in a couple of sentences (which is all too easy), I find it incredibly disrespectful and insulting.

 

[Jazzer]

Somebody needs to be saying that their life, of achievement, excitement, romance, near exquisite beauty - over night - turned into an horrific unbearable existence of torture by noise and pain; a nightmare far worse than anything they could ever have imagined.

 

[Greg Sacramento]

I have been contacted by a few family members one being a doctor by PM, after they did the required posting to discuss catastrophic tinnitus with whiplash of a loved one. Even the doctor could not get the help that he needed for his loved one within their healthcare system. I have also seen this myself over and over again within healthcare. In the US there are a few hospitals with trained doctors where the rich get in patient treatment over a course of a week or more.

The problem is that the medical community isn't set up for tinnitus care for most of us. Within medical training, tinnitus is just a mention and only the basic causes such as loud noise hearing loss and wax in the ear is known by non ENTs. Using any approved device isn't going to be as simple as using an electric shaver. Any neuro drug will need to be given many times by IV costing thousands of dollars for hospitalization.

The real problem is who with a platform wants to go up against the medical and dental community for better care and make enemies. The ATA doesn't. More than half of their BOD are ENTs and audiologists.

 

[Jcb]

Anytime... after your condescending comments to me, you had earned it.

Maybe you are one of those guys who can dish it out, but can't take it?

Not all man, I give as good as I get especially when somebody is attacking somebody trying to make a difference.

 

[Jcb]

I think the major point here is and this has been raised by @Telis and others. Those with severe T are virtually crippled by this condition, drowning in stress, insomnia, financial worries, relationship breakdown....basically isolated and tortured. We're not really in a position to 'help' because we're clinging to life and just trying to survive. We rely on the BTA to tell the world, 'look these people are desperate and killing them selves because they have no other escape from daily torture and if they don't commit suicide their condition gets worse and worse and worse.'

Anyone who thinks this is fanciful is a fucking delusional apologist because I genuinely don't know if I'm going to make it through Xmas as a homeless sufferer with zero family or support during this holiday period.

You can all go and attack Wolfears and me but your version of life with this condition where you run around working on little projects is so far from my fucking nightmare reality it's untrue.

I'm done with this bullshit. Good luck all

I agree with what you are saying, I'm in the same boat man right next to you emotionally and financially. I think you and wolf were out of order attacking Hazel before the guide is even out, I'm all for questioning something especially when you don't agree but I think the guys and gals at TT are trying to make a difference with the limited tools they have. As far I can see Hazel has been doing a lot in regards to how severe this can be.

Buddy you write a lot of posts (which I enjoy) write your story and make a difference no mater how small it may be.

We are all in this together.

 

[Jcb]

It's time for the segment of this thread called "derpytia gives her two cents worth!"

Have you forgotten that there may be people out there with new, catastrophic tinnitus just like you that is searching these forums for some sort of solace? What about those who are looking for a community of people with tinnitus to be a part of so they don't feel so alone with this condition? And what are they going to find?

I can only think that such fighting is the result of being struck with desperation borne out of dealing with your tinnitus in either an unhealthy way or alone for too long. And I get that. I really really do. But it DOESN'T EXCUSE this sort of behavior. It just doesn't.

Your suffering is valid! The moment someone invalidates you doesn't mean that the rest of the world has. Try to wrap your head around that! Tinnitus makes it easy for us to give into our brain's lies that we are alone and no one gives a crap about us. That is a LIE. There are plenty of people who don't care about us unhappy sufferers but there are also people who DO. Don't throw the care and support of those few people down the drain just because it feels like the odds are stacked against us. That is cheapening the support that we do have.

Before someone chimes in with a "derpytia doesn't understand our suffering" go find my "Success Story" in the Success Stories section of this forum. What I've written isn't anywhere close to being what you think it is.

If you have wronged or hurt someone in some way on this forum, please consider swallowing your pride and apologizing. Don't expect forgiveness (because no one is owed forgiveness just because they apologize) but be pleasantly surprised and thankful if it is extended to you. Likewise, if someone apologizes to you, consider letting your hurt and anger go and forgiving them so that you and they can move forward. Consider doing these things so that we as a COMMUNITY can move forward, no matter how much it hurts, and accomplish some wins for the team!

So many TT rules and netiquette have been broken here and I'm disappointed in it. We can do better. <3

Well said, I stand by everything I have said especially with the unnecessary attack on Hazel. I maybe should of worded it better, my emotions got the better of me and apologise to anybody who was offended, that's not who I am as a person.

 

[Ed209]

Well said, I stand by everything I have said especially with the unnecessary attack on Hazel. I maybe should of worded it better, my emotions got the better of me and apologise to anybody who was offended, that's not who I am as a person.

Same here. Last night emotions got the better of me as I saw the work of Hazel, Markku, and Steve ripped to shreds in a few sentences. We are talking endless hours of hard work and selfless sacrifice here, and this includes flying to other countries to attend seminars and conduct interviews/Q&A's, etc.

After Markku had spent forever editing the latest video (discussing research), John Adams said he hated it before he had even finished watching it. These are the kind of things that add up in the back of my mind and make me wonder why the good folk at TT bother.

Again, I apologise for my language in the heated debate yesterday, but I stand by what I said.

 

[Jazzer]

If their help is to create watered down pamphlets about coping with this life destroying disease we don't need their help.

We need a strong message to the world that tinnitus needs to be cured above everything else right now or people will keep suffering horrendous torture and killing themselves day in day out.

End of. That's the message. Clear and simple.

@Bam - I am barely holding myself together.
You've met me.
You know don't you.
Like you - I live in interminable loud noise and and head pain.
Somehow I've made it through this shit for over four years.

Unfortunately we both belong to a group of severe sufferers who know that this 'thing' is not a matter of perception, who know that it has nothing
'what-Fucking-ever' to do with simply choosing happiness, and going out to enjoy the sunshine.
I mean F.F.S !!!

It has to do with having everything we hold dear, crushed by interminable noise and endless pain.

Can we do anything to effect any kind of change, or is all that just futile?

Can we even summon up the energy?

Is there any point?

 

[JohnAdams]

After Markku had spent forever editing the latest video (discussing research), John Adams said he hated it before he had even finished watching it.

I jokingly said I'd pay them to have it banned. Then the next day I watched it twice and gave honest feedback. I never said I hated it. Stop spreading lies about me please.

This is my problem with you, I generally agree with your opinions and appreciate the work you do, but I'm not going to sit by and let someone twist my words around on a public forum.

 

[Steve]

I have only read a few posts, mainly after being tagged. I don't have loads to say and I don't want to spend my weekend reading it all from what I've seen.

The internet is full of people who are quick to criticise everything and do nothing. We have our share of that here.

Leave this forum and try doing something on your own if you feel so badly let down, grasp the initiative and see for yourself what it takes. We are people with tinnitus, who bother themselves to try and make a difference, giving precious amounts of free time that we can easily spend elsewhere.

I am the polar opposite of the ranting crowd. I usually consider my words before I put something into print. If you were in front of me, you would get a full understanding of what I think of your attitudes and actions.

 

[Suzerman]

What I personally think would raise the most awareness is just exactly that.. how common it is, and how this affliction can affect anyone, sometimes even randomly for no clear reason. It happens to all ages, all genders. It does not discriminate.

Personally. I find that the scariest thing about tinnitus that it can happen to anyone and how common it is. And if it gets bad your life is completely altered in a way most people can't even imagine. I've always feared tinnitus even before I got it, because I couldn't possibly imagine the terror of a noise constantly being there in your head. I still count my blessings everyday that its mild, but always feel the hanging terror above my head of it possibly becoming severe one day.

But if I had known that it was a very common affliction, and that hearing loss is a main contributor, I would have definitely done a lot of things differently and taken better care of myself and my ears for sure.

 

[JohnAdams]

I am the polar opposite of the ranting crowd. I usually consider my words before I put something into print. If you were in front of me, you would get a full understanding of what I think of your attitudes and actions.

Which is why people like you and not me are the voice of this community. It's called diplomacy.
Someone like me has a very military mindset, If I were the voice of this community, I would be organizing mass protests in front of the FDA to demand accelerated development of hearing loss treatments, that would inevitably fail in the face of negative media coverage.

I don't think any of you are stupid. I just wish you would start promoting awareness of the various technologies that hold the potential to restore hearing loss.

As of now, there is scant understanding of tinnitus to provide a path forward for a drug that will silence tinnitus without having bad side effects. The drugs to restore hearing loss are not going to be needed daily, they hold the promise of a cure, if tinnitus from hearing loss can be eliminated by restoring hearing. I may be stupid for saying so, but to me this is like the most profound area of tinnitus research and I just can't understand why more (any) attention isn't being given here.

I'm not sure if I have ever seen anything from ATA, BTA, Tinnitus Hub, etc that has even made a single mention of regenerative medicine. I have seen loads of references to TRT, CBT, beep machines, and other non cures and I just don't get it man.

 

[Markku]

I'm not sure if I have ever seen anything from ATA, BTA, Tinnitus Hub, etc that has even made a single mention of regenerative medicine. I have seen loads of references to TRT, CBT, beep machines, and other non cures and I just don't get it man.

We gladly mention any of the regenerative treatments. Even publish a video about it on our Facebook to the 10,000+ fans.

In regards to the video @Steve did with @David about their feelings on tinnitus research, there is probably a good reason why it didn't cover regenerative medicine. Regenerative medicine wasn't (as far as I know) part of the TRI 2018 conference, in any significant amount at least, nor was it discussed at the BTA Conference. These two conferences were much of the base of the discussion they had in the video.

But I agree it would be interesting to have a video discussing regenerative medicine, its current state and what can people look forward to in the future (realistically).

Do we have people who would like to create such a video? Maybe in the same style Steve and David did theirs?

Also, I take offense at you even insinuating we somehow promote TRT or CBT - good luck finding mentions of TRT and CBT on our social media. Actually, I have been quite critical of TRT (and the amount of funding it has received in contrast to other actual curative therapies):

https://www.tinnitustalk.com/thread...training-therapy-where-are-the-results.13016/

A thread which we also linked to from our Facebook and Twitter.

 

[JohnAdams]

Also, I take offense at you even insinuating we somehow promote TRT or CBT - good luck finding mentions of TRT and CBT on our social media. Actually, I have been quite critical of TRT (and the amount of funding it has received in contrast to other actual curative therapies):

My apologies, I could have worded that better. I was mainly talking about the ATA and BTA. I guess I could have made that distinction more clear.

 

[Elfin]

If I were the voice of this community, I would be organizing mass protests in front of the FDA to demand accelerated development of hearing loss treatments, that would inevitably fail in the face of negative media coverage.

Can still organise those, John. That's what the team are saying. No one is blocking you from doing anything. Get the protests going. Give me enough notice to get my placard sorted though!

 

[JohnAdams]

Can still organise those, John. That's what the team are saying. No one is blocking you from doing anything. Get the protests going. Give me enough notice to get my placard sorted though!

I really don't think street protests will do anything. There are many factors at play here including big pharma interests, corporate profits.

My idea was that *somehow* the ATA, BTA, and other tinnitus groups could converge and form a dialogue with Frequency Therapeutics and other companies like Otonomy to see in private the raw results of their work in progress, and then if they are promising, to then go to the Wounded Warrior Project and form a lobby and promote public awareness to get this technology super fast tracked.

Since 9/11, the public has been fed a steady regimen of pro soldier, pro war, information. "Support the troops" is the slogan, and it has stuck profoundly in the public's minds. Tinnitus is a huge problem for veterans as well. I think "we" could use that to get things moving much much faster as opposed to just waiting and waiting and waiting for the corporations to dance the Tennessee Waltz with the FDA, an organization headed by an investment banker.

I strongly believe that there are economic factors that slow things like this down. That's what lobbyists do.

 

[emmalee]

I am the polar opposite of the ranting crowd. I usually consider my words before I put something into print.

If only everyone here would try their best do the same, Steve. Well thought out and respectful words are far easier to hear than harsh, hurting ones.

I understand that emotions can run high, but we are all responsible and accountable for our words, no matter the circumstance.

 

[Greg Sacramento]

How do we accept agreement on the best approach to help those with tinnitus/hearing loss is a question that just blows circles in the wind.

There is no such thing as a little tinnitus/hearing loss and when one gets older it could show more of it's ugly head dependent or not on other biology concerns. Visit a large nursing home and see for yourself. https://www.nidcd.nih.gov/health/statistics/hearing-loss-increases-with-age

Most somatic conditions contain massive nerve programming, so any physical problem must be completely addressed. There's six major physical regions that have tinnitus involved as I recently listed. Many individual problems in these regions can cause hearing loss and tinnitus.

The amount of hearing loss does make a difference with physical treatment. Early and complete examinations for many with tinnitus is needed, so the brain doesn't set a normal to the abnormal sounds that we hear. The medical community isn't set up for this, unless your rich and famous.

Most physical problems where tinnitus has involvement is known, but healthcare won't go searching just because one's concern is tinnitus. There's 300 listed jaw and oral cavity conditions that can cause tinnitus where few dentist are qualified or care to examine. Visit dental boards where dentist argue on the nature of responsibility and ethics.

I have an elderly friend where his doctor has continued to give him a treatment drug that was call backed worldwide last July because it can cause cancer and hearing loss. I contacted a clinical pharmacist with a ph.d. His life study has been about bad drugs. He works for a large respected research company where they all have at least one ph.d. They research just about anything from environment to human needs. They are not bashful in telling the truth. This clinical pharmacist isn't surprised that doctors give toxic drugs to those with tinnitus. He has found a safer drug for my friend and feels that his tinnitus may improve.

It's fine to support research, but focus also needs to be on safe and complete medical care. This type of awareness requires writing to governments and medical associations. Also to support lobby activist groups who protect human rights.

 

[Jazzer]

View attachment 24746

P.S.
I seemed to have used the words "arse" and "arses" in my little rant apologies to the forum for my abuse of that word.

this young lady does have a very nice one!

 

[GregCA]

The amount of hearing loss does make a difference with physical treatment. Early and complete examinations for many with tinnitus is needed, so the brain doesn't set a normal to the abnormal sounds that we hear. The medical community isn't set up for this, unless your rich and famous.

What kinds of treatments do the rich & famous get and what purpose do they have?

 

[Greg Sacramento]

Focus should be on condition improvement for some and not a complete cure unless a vaccine has promise. Chemotherapy use might be successful for some with certain types of cancer. Vaccines are for prevention. How often is a cure found for any obtained disease. Tinnitus is a disease and it can associate to most biologicals - the human body.

As it stands there are many treatments for conditions available and we need more, but the medical and dental community isn't up to speed. Add tinnitus to the mix and look luck for assistance from the medical community. They will offer drugs, often less costly harmful drugs.

Turn the lights off within a hospital patient room or a surgical room and use a black light. The room will light up like a Christmas tree. Next to infection being passed on to patients and cell, tissue, or nerve structure injuries, tinnitus care injuries or treatment injuries including drugs comes next. For those with tinnitus, doctors are often clueless as to which drugs are harmful. The number one in-hospital or medical setting error not reported to agencies is for someone to report that their tinnitus was made worse with irresponsible care. Infections pasted to a patient are not always accounted for unless a wide infection population breakout happens.

People buy computers, cell phones and TVs, but good are they without a provider. It's the same with tinnitus and it's associated conditions as the medical community needs to be the provider. No one with a platform wants to voice this issue and speak out because it they do, enemies will be made and their support box will be completely turned off.

I have posted at least 6 links with remarkable treatments that healthcare won't bother with. I have been told by researchers that tinnitus improvement could be seen by many if healthcare would smarten up. The procedure in this link could help a few.

http://www.icnr.com/cs/cs_50.html

Other links include being hospitalized on the spot with an onset of tinnitus, where IV drugs are given with daily HBOT. Some cancer drugs can be given by pill, but not drugs for CNS combo delivery.

Our good friend @Bam recently said that his health plan required a visit to an ENT. Bam said that the ENT was understanding and such, but he offer him a color ultrasound with brand new technology that can see if there's a nodule or twisted nerve which can happen with a car accident. This may not have shown with development last year and older technology may have missed this anyways. Radiologists often need to compare time spaced radiology test results with having tinnitus to compare what would be considered negative as in normal.

 

[Greg Sacramento]

What kinds of treatments do the rich & famous get and what purpose do they have?

There's been two admission stat placements into a private hospital room ordered by private physician without ER wait time for SSHL onset tinnitus with my former employer. Both were not famous on their own right, but related to ones that were. I know of eight hospitals within California who treat the famous with very specialized services inhouse where for others treatment is limited as ER or outpatient.

SSHL - tinnitus
intratympanic dexamethasone, sulodexide monotherapy, intravenous gadolinium, HBOT 2/24 times, oxygen rejuvenation therapy and other drugs by IV or injection.
A private doctor, pharmacist, respiratory therapist and nurse.
https://journals.sagepub.com/doi/abs/10.1177/0194599818767618?journalCode=otoj

Treatment of special consideration - example
https://journals.sagepub.com/doi/full/10.1177/0269215512447085

Always fresh flowers daily at the hospital's expense to cheer them up.

 

[GregCA]

There's been two admission stat placements into a private hospital room ordered by private physician without ER wait time for SSHL onset tinnitus with my former employer. Both were not famous on their own right, but related to ones that were. I know of eight hospitals within California who treat the famous with very specialized services inhouse where for others treatment is limited as ER or outpatient.

SSHL - tinnitus
intratympanic dexamethasone, sulodexide monotherapy, intravenous gadolinium, HBOT 2/24 times, oxygen rejuvenation therapy and other drugs by IV or injection.
A private doctor, pharmacist, respiratory therapist and nurse.
https://journals.sagepub.com/doi/abs/10.1177/0194599818767618?journalCode=otoj

Treatment of special consideration - example
https://journals.sagepub.com/doi/full/10.1177/0269215512447085

Always fresh flowers daily at the hospital's expense to cheer them up.

I don't mean to be confrontational, but these treatments are offered to the non "rich & famous". It's pretty common to be offered prednisone (oral) or dexamethasone (intratympanic) for SSNHL if you go to your doctor early enough after symptoms and your doctor isn't clueless (perhaps you can make a case that with $$ you can pay for a doctor who isn't clueless).

The other things (sulodexide, HBOT, oxygen...) are all very experimental for T (the study you quote was first published in May 2018! just a few months ago - so it's not like it's a common treatment everywhere) and none of them have reached efficacy/risk levels good enough to be on the "regular menu" of your ENT doc.

But if you do want to do them, you can: there are reports on this very forum of people going for HBOT (example https://www.tinnitustalk.com/threads/a-car-accident-after-hbot.26241/ ), or sulodexide (example https://www.tinnitustalk.com/threads/tinnitus-and-nightmares.31521/#post-372983 ) or other esoteric treatments (stem cells, etc...). I mean if you can think of anything, you can be sure someone on this forum has tried it (saffron, bark, apple cider vinegar, you name it).

Of course, being rich and famous affords you access to "better doctors" in theory (or more of them so you can have multiple opinions) and you can afford to try many things, but I think it's a bit misleading to convey the idea that having $$ will bring you salvation or relief. There is no cure, no matter how rich you are at the moment. Money will let you try many different things, some of which could make your condition worse (some people in here tried HIFU with a worsening outcome).

I remember a post from a guy who said he was quite wealthy (multi-millionaire) and he was stuck like the rest of us.

Fresh flowers are great, but they won't cure your tinnitus.

 

[coffee_girl]

For once I am not starting fights, gonna grab that popcorn and enjoy the circus show =]

 

[Greg Sacramento]

@GregCA Look for keywords in reference to immediate action. Unless one has a face that's seen on the internet daily and has a private doctor with hospital practicing rights, fast needed medical attention may not be available. ERs can be crowded and often patients are told to make an appointment with their doctors for follow-up. With tinnitus, an ENT may be able to seen within days or it could be weeks.

The rich and famous do get special care and that also includes non tinnitus hearing onset issues. I have heard many times from a nurse if we were able to give a numbered patient a quicker response that patient would be living now. Years ago that was often the case with a stroke patient.

In the case of acute tinnitus associated with sudden hearing loss or noise trauma, treatment strategies which restore hearing function are expected to have beneficial effects on tinnitus from sudden sensorineural hearing loss up to 65%. Patients can receive spontaneous recovery with immediate treatment.

There are different forms of sudden sensorineural hearing loss with different etiologies. They include vascular, inflammatory and infections. To this point - source Berthold Langguth & Ana Belen Elgoyhen.

If there's an inflammatory process taking place then that needs to be addressed immediately. The same with vascular so that blood tests are stats.

Drugs directed against apoptosis and oxidative stress can provide valuable protection if applied immediately after exposure. Good luck with anything mentioned so far if one of us receives trauma from fire works at 10 pm at night.

With vascular - cyclobenzaprine may help. Vascular vasodilator cyclandelate - diuretic furosemide, prostaglandin

E1-analogmisoprostol, L-type calcium blocker nimodipine phospiesterine, type 5 inhibitor nimodipine, type 5 inhibitor vardenafil.

Glutathione needs to be given to detoxify the liver and other parts oxygen radials from medications.

One of many links:
http://exodontia.info/files/JOMS_2013._Sudden_Hearing_Loss_After_Dental_Treatment.pdf

 

[Greg Sacramento]

@GregCA Have a good day and I wish you a kind season and new year.

I do stand by everything that I ever said within this thread and elsewhere about a nonworkable irresponsible healthcare system for those with tinnitus. I've seen the inside data, stats and results going beyond p values as I was part of the healthcare system. Not only for hearing loss, but for physical tinnitus per infection issues. Immediate and comprehensive care does make a difference.

San Fran, Silicon Valley and parts of LA do have some validity to your thesis because of a larger upscale population.

 

[david c]

An interesting thread. I know how hard it is and how much work is involved in trying to change attitudes and challenge information. A couple of years back in the UK the main NHS information webpage on tinnitus was describing it as "only a symptom not a condition in its own right". I spent hours of my time bombarding them with emails/online comments etc and eventually I was able to get this information changed (I do have the relevant emails to me from the NHS talking about this change by the way as proof if needed as I know that two individuals on tinnitus talk have sadly been all too keen to try to smear my name and call me a liar).

Recently I've been able to get the BTA to remove information on their website claiming that for the majority of people with "tinnitus it doesn't affect them at all". So these incremental changes can come about - the key unfortunately is really putting a huge amount of time and effort into making them happen. I'd be delighted to see a clearer classification system for different levels of tinnitus put into effect - one which acknowledges just how severe it can be in some cases, but also how even in "milder" forms it can have a really negative life impact.