Please Don't Say There's No Cure for Tinnitus

THIS IS ONE OF THE BEST THINGS I HAVE READ HERE, THANK YOU!

 

@Lurius, I agree with you and thank you for the kind words.

There are many ways to be in the service of others, to help. I'm glad that you have grown as a person through all of this, you have let this chapter teach you something about yourself. That's wonderful.

George

 

With my education and trauma hospital experience in anatomy, physiology, biology, mind and body, I don't have an answer to lowering or coping with severe physical pain in multiple areas. Damaged nerves in my mouth is bad enough, but nerve disease pain in my legs and feet is so severe. My legs and feet are on fire and swollen to twice normal size.

I can't take pain meds because of nerve disease and besides pain meds made my tinnitus sonic, comparable to having whistles being blown into my ears.

 

Without going into debates (I did this before but I’m not doing this anymore to protect my mental health), I wanted to say a huge thank you to @GeorgeLG for his valuable contribution. It definitely does not go unnoticed and many people who silently read it, are definitely being helped by this. I think that some people are really forgetting that apart from ear issues, George has been dealing with a myriad of other extreme challenges at the same time. @GeorgeLG’s attitude towards them is, to say the least, very inspiring.

 

It sounds so awful. How do you manage?

 

Thank you for your kind words.

George

 

@Greg Sacramento, I don’t want to intrude so only if you feel like sharing, how did you come to be in so much pain? Did you have an accident or develop a degenerative disease? It sounds like you have many challenges my friend. My thoughts are with you and your suffering today.

George

 

@Lane, just to follow up. I read the book and then paid for an evaluation based on pictures that you send in. That resulted in a personalized menu of exercises for my specific issues. That resulted in some pain so I contacted them. Their solution was to sell me a higher level of service to fix the problems with the original recommendation from them so I passed. I'll do my best to work with the guidance in the book going forward. I believe with you that correcting structural issues is important and I enjoyed his book but I don't like the tactics of the branch that they assigned me to.

George

 

@GeorgeLG & @tpj, working twelve hour hospital shifts four days a week, plus two or three eight hour shifts in a sister hospital within the same week, which I did for years. Often spent 72 hours a week working mostly on my feet. Trauma medicine can take a toll on employeees.

Emergency syringing of ears from pigeon dust received from helicopters landing on the roof of the ER gave a catastrophic tinnitus classification from my ENT. Damaged nerves in mouth came later which gave me severe pain and somatic tinnitus. Received pulsatile tinnitus from blood pressure hypertension causing eyesight and organ damage.

Thanks for caring.

 

I can chime in on this one (because I have been and still am on both sides of the fence).

Tinnitus, its severity and how it affects us can be QUITE different for many people. In the beginning of my journey I had very mild (90% of time never heard it) type of tinnitus and hyperacusis. As the years, decades, has passed on, it has gotten MUCH worse. It's screaming at spike level 24/7 and it's beyond severe (it's a mess).

Tinnitus has made me give up many things, adapt to new ways and just evolve.

I have been supporting people here for a long time and I have always been very encouraging.

In my opinion, it's never BAD to encourage people. Whether they have mild or beyond severe tinnitus like myself.

All of us need some uplifting, even if we didn't have tinnitus, we could have had hard times in life. Now, the type of hell that tinnitus can bring can be quite different. I fully get that and I have to deal with a screaming pest till I go to sleep.

Even though I do try to encourage people, I also know just how bad and severe the tinnitus can be and how it can change our lives.

I think encouragement is a great thing, but being realistic is also very important. My goal has always been to spread the message of positivity and give hope. I use my stories to inspire people and have been doing this for quite a while.

My words are humble, honest. I feel that all of us could use a lift-me-up at times. Some folks on this forum are beyond amazing at doing this.

By spreading the words of encouragement, we can potentially help our fellow forum members move forward.

It can possibly help some folks take those small steps, that can become small wins.

Go for your small win today and keep moving forward.

 

@fishbone:

What if this is a condition that, in spite of your best efforts, nonetheless incapacitates you (as it has caused me this summer on a few occasions to almost totally black out and lose consciousness) so that your wife, relatives, friends (and everyone you know) abandons you as a lost cause, a strange pathetic case, someone too difficult to associate with, etc. What if you are therefore left utterly alone with no support system?

What if driving exacerbates this to the extent that you are so mentally undermined that you are afraid you will cause an accident?

What if, in spite of your best efforts to remain positive, these near-blackouts afflict you with the uncontrollable force that an epileptic seizure would? What if this still overtakes you no matter how much positivity coaching you internalize?

What if (as I have done) you see 3 ENT Doctors and 1 Psychiatrist, all of whom dismiss you with the staggering, black pill commentary that there is nothing that can be done for you?

What if this (for the abovementioned reasons) makes you unemployable such that you are staring the breathtakingly horrifying prospect of homelessness in the face?

Oh, and incidentally, I felt somewhat alienated by that "shitfaced" logo since I have been a member of AA since 1981 and my best friend from grade school and a close relative both died of alcoholism before they were 55. Recently I read of an excellent definition of communication; it is the transference of understanding. If that logo indicates that drinking is a legitimate means of self-medication, then you and I will be sadly unable to engage in any degree of moral communication.

 

There was very recently an article in a national newspaper (in my country) by an author where she asks if maybe "mindfulness" and "positive thinking" is not enough to combat "real problems". That these tools have a serious limitation. No big surprise, I applauded this and shared the article.

I don't think most people without tinnitus, hell, I would say ALMOST NOT A SINGLE ONE OF THEM, is able to comprehend what it's like to suffer severely (I say this instead of "severe sufferer") from tinnitus. It's not their fault. It's simply not in their "toolbox"; because empathy requires a degree of understanding, and that understanding must come from somewhere. Usually from having experienced it themselves. Or similar. Tinnitus is a quite unique experience. Very little else is like it. So I do not blame them anymore, but I still feel frustrated and keep away from them. It's very tiresome to have to explain and even more tiresome to constantly have to ask them to be gentle with noise around me.

 

Dave,

First of all that name under my logo, has nothing to do with drinking (for me it doesn't). My tinnitus is beyond hell level and as much as I'd love to escape it I can't. I do not drink, or take anything to help with this horrible ringing. My only way of living this life is facing this reality.

My only outlets in life, to face this horrible ringing, has been my pets and exercising. I have dealt with some pretty horrible setbacks. My baseline has become such a level of madness, BUT, that's the reality I face.

The tinnitus has taken a lot from me. It really has, but I still have to move forward.

I have had to adapt and CHANGE so so much in my life, to accommodate this ringing.

It's been tough and still is tough, but I will always try to move forward no matter what.

Just because I come here and support people, I don't think life is so easy.

It's not, it takes lots of effort to push through the days.

 

@fishbone, over the years, we both tried to assist others over our self conflicts. Place usernames, first or full names of those who assist others, into the Tinnitus Talk search and much feedback and appreciation will be found. You are a giver and I love you.

I have severe tinnitus, severe somatic physical tinnitus and severe pulsatile tinnitus. My sloping hearing loss is off the chart. As my severe physical conditions and severe pain becomes worse, I'm able to say, screw my tinnitus.

I told that I will soon need amputations of both legs. On top of that, I will need all teeth pulled because of nerve destruction.

 

I have the same frame of mind. I told the music store manager I regularly deal with "it's just what it is."

I have to live with it which is why I am back to playing electronic drums with volume control and custom OTO musician's earplugs and limited time when I do.

 

Have you tried stem cells?

 

@DaveFromChicago, I am sorry for your suffering, it sounds like you are having a rough time. I hope that you can find some relief. I wish that I could help you and I am sorry that I cannot. I am glad that you have this forum.

I don't understand this however. There are tens of thousands of members here with severity all over the map. A great many ask for help and relief comes is many forms, none of it applicable to everybody. Some say cured, some say relief, some thank us for helping and some like yourself say nothing works. That's how every disease is, a normal distribution of outcomes. Miracles to soul crushing tragedy. Most are thankfully somewhere in between. The "what if" statements can go on for days. Sure what if Dave is in so much trouble that nothing helps. But what if when we try to help, hundreds are then able to lead a better life as is stated here all the time. What if we save a life, save a marriage, help people cope better? What if we can look outside ourselves and care about helping the thousands in need who come here? I know pain and suffering brother, I have my share but it's not all about just us. We matter, we need help too but this is not a forum for just a few who suffer the most.

So what is the answer to your question, "what if" Dave suffers so much? OK, Dave suffers terribly and cannot find relief. That is tragic. You will never be invisible, you will always have my deep concern for you. So now what are we to do with or for the thousands more who came here asking for help and some of us are trying to give it to them? I love you brother but I don't understand how we can bring you what you need and then keep trying to help others. Those two things need to coexists. Why don't you start some Dave threads of your own to get what you need personally and let others help less severe sufferers in threads like this?

Just for the record, I recovered from alcoholism in 1998 and did not even notice @fishbone's avatar. My alcoholism is my personal journey and everyone else is in charge of themselves and can party or avatar their ass off and I'm good with it. Every post/avatar is not talking directly to us.

George

 

Spot on. You are an inspiring soul @GeorgeLG. Stay strong, and keep up with "making a difference".

It's never wrong to encourage, nor have the wish and will to provide help to anyone - it's human and a symbol of humanity:

Whoever destroys a soul, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world.

[Talmud]

 

@MindOverMatter, thank you. I think that there are more people who come here and need our help than we know. Most are quiet and lurk in the background, reading and being affected by what we write here. I have seen more than one register and post just to thank us for helping them.

Keep fighting the good fight and never waste a good day brother.

George

 

@GeorgeLG, it's nice that you came to Tinnitus Talk to help with encouragement. I spent more of my time talking to those with physical causes of tinnitus. Sometimes it wasn't difficult to know the physical cause, but other times it required lots of thought or research. I've written about many physical associations to tinnitus, but the many article links I've provided have value. With one who had very severe tinnitus - after 1000 posts between us, a cure.

I posted on a local private tinnitus group with some former trauma healthcare friends and we got some great results. There, medical history records and exams were available - including radiological. Much communication was sometimes needed.

My 10 hour days and nights doing this has come to an end.

I know you will be a great asset. I made many friends here. I'm sure you will make many friends.

 

Thank you @Greg Sacramento, you have made many great contributions and helped a lot of people and still do. Hang in there brother, the challenges come and then we deal with them. It’s all we can do. I love you man.

George

 

I agree, George. Greg is an institution here.

Greg, like George, I love you. I'm sorry for all you are going through and I'm so impressed with all the help you keep providing to single people with detailed advice and specific suggestions. This is particularly important for the severe/catastrophic cases, they need specific advice and counseling, a blanket encouragement to acceptance may induce desperation in those who can't stand the pain and backfire with catastrophic consequences sometimes. An individualized approach is key for these people.

I agree with everything you said concerning those with severe tinnitus or with pain, and more so with your last several posts.

Thank you for this, my friend. I can only imagine how much it's costing you to keep helping here.

 

Decided to make a "How to" tutorial video ▼ for anyone interested in TRT, CBT or BTS for tinnitus.

 

Well that’s the first post I’ve ever seen on Tinnitus Talk that I actually think should be removed. There are kids here (thinking their lives are over)! Know your audience!

 

What's the Norwegian word for "irony"? That thing where a comical set of circumstances arise out of some type of absurdity?

Let me provide some examples so you can help me out:

Example 1:

Telling a guy who has suffered tinnitus for 19 years since he was 13 years old, how his posts might be received by young people with tinnitus.

Example 2:

Telling the guy who has suffered tinnitus for 19 years since he was 13 years old, to know his audience, without bothering to learn the above fact, and know who they themselves are talking to.

Example 3:

Posting something like this ▼ and then expressing concern about posts giving young people on the forum anxiety.

Trying to think what would make me feel worse...

A post ridiculing the demented approaches to tinnitus that encourage people to expose themselves to further noise trauma and return to the forums with 5 times what they were already struggling with.

Or, a post telling me that if I'm not positive enough, my tinnitus will undoubtedly become chronic and continue to worsen.



It's a toughie.

But yeah, you're right, we should remove all posts that instruct tinnitus sufferers to protect their ears from noise; they could cause tinnitus sufferers to protect their ears from noise, and who knows what that could lead to!

Good call @Pistolpete.

Thank god we have veterans like you -who see the big picture- to put noobs like me -who are very much caught up on the smaller picture- in their place.

 

Ironi.

If your post truly was an effort to warn sufferers against noise, I’m sorry.

 

The title of this thread, whilst still relevant in there being no 'cure', we have a 'treatment' coming to market + 2 treatments in clinical trials that complete THIS YEAR!

 

Several years ago a small group of selfish and immature members decided that habituation was not an acceptable subject in this group, and made it nearly impossible for anybody to post about it. Most of these people have moved on, thankfully. Until there is a scientific cure, habituation is the best solution for the majority of people who are troubled by tiinnitus, and this should not be taboo to discuss, especially with newbies who need assurance. Just my 2¢.

 

When I first got tinnitus, I went over to the American Tinnitus Association to pick up some brochures, as Portland just happened to be where I got it. The words that stood out were "Tinnitus is not treatable, and it is permanent", or words to that effect. They may have changed that since then. Reading that really floored me! At the time mine was very, very loud. I had to "sleep" w/ a radio in the bed right by my head w/ the volume turned up nearly to the top.

Weeks later, an accidental walk over a low bridge that had a stream rushing under it also floored me... I didn't hear my tinnitus for the first time since getting it! So non-treatable and permanent, no big deal. There are workarounds, there are things that make it worse or better, there is finding masking sounds that really help, my tinnitus can almost disappear or come back very loud. It's OK, life goes on. Swimming, doing art or photography, listening to music, having good conversation w/ others, watching a good movie, riding my eBike... I don't hear it at all doing these things.

Idle hands are my tinnitus's workshop.

 

Damn, that's frigging horrible luck. Thank you for your service. I worked 12 hour shifts at Parkland Hospital in Dallas on the rehab floor and that was hard enough on me. Jeezus. Love you man. Hope you feel better.