I Think I Was Looking at Tinnitus Wrong and You Are Too

[Tanni]

In all honesty, it is irrelevant what I think, Dave. What is relevant is that we all suffer with tinnitus and we all deserve the same amount of empathy and support from this community. In the year that I have been coming to this forum, not one person has ever made me feel unwelcome or made me feel that my opinion didn't matter. I will pay this forward, always.

I welcome any and all insights, from everyone who comes here with a story to tell. It isn't my place to judge, only to listen and perhaps offer some support.

Couldn't have said this better Emmalee!!

 

[Greg Sacramento]

The IP probably has had some lowering of T and discomfort as that happened once before. So the IP might be using fear reduction as a way to psych self by posting confidence of self consciousness and worth. Whenever there's even a slight decrease of emotional and physical pain, one will feel to be in a better place. There also might be a weighting of guilt from his previous lifestyle and his present responsibilities to family. His message is really to self. The IP got lucky with reduction as before. If his tinnitus was severe the story that was told would be different and he would be asking about coping methods, vitamins and seeking self support.

I don't think that there's ever been one to post with severe tinnitus that talked about being positive without a reduction or settling of T.

 

[nimx]

I can spot 'run of the mill' insulting crap from lightweights a mile off.

The difference in how much people will suffer is intensity and volume, not emotional fragility or better perception.

Just in case you heroes don't realise it - severe tinnitus can and does kill, on a daily basis.

Be thankful you do not suffer to this extent.

Mine was severe for 2 years, when I started to try, with trial and error at the beginning, to manage my reactions I felt OK even with it ringing loud. Only after another year it started losing intensity and volume. Not vice versa. Now if I have t or not is the same. Perception shapes and changes everything. You could break your leg, still if you are insensitive to pain you won't suffer, trivial example but gives the idea. As I said, some people have no fault just can't get it and will refuse this possibility and I'm truly sorry I can't change this. I'm sorry if I offended anyone it was not my intention.

 

[Jazzer]

I can no longer maintain any interest in the comments I have read on this thread.

 

[just1morething]

I can no longer maintain any interest in the comments I have read on this thread.

Sorry that your noise is so severe. I hope something helps you get some kind of reprieve.

 

[Jazzer]

Sorry that your noise is so severe. I hope something helps you get some kind of reprieve.

I am okay J1MT.
I have learnt to cope by means of meditation etc...

If this is a serious support group designed to help people with debilitating tinnitus then it is actually my duty to confront self-preening well-meaning advice dished out by the latest 'would-be tinnitus gurus,'who like to spout that old chestnut,
"I did it - and you can do it to."

This tripe demeans the suffering of the most afflicted, and cheapens the image of those precious tormented souls like Gaby Olthuis, who opted for euthanasia, and the skipper James Ivory Jones, who threw himself off of a quarry ledge, because of mental and physical torture.

Shame on you pathetic 'nay-sayers.'

 

[Jazzer]

 

[Jiri]

I welcome any and all insights, from everyone who comes here with a story to tell. It isn't my place to judge, only to listen and perhaps offer some support.

The debate handled with grace and class. Nice.

 

[Greg Sacramento]

@nimx I read your entire history. Reason being a comment by someone may not be black and white without more information. You have stated before that some with severe tinnitus will not be able to recover and that you understand.

Sometimes people will hold a grudge or bitterness towards someone on one single incomplete thought when they have also expressed positives to the same subject matter before. So then it's wrong by not honoring that person for anything else that they say. That would not be fair to you and I'm sorry that this happened.

 

[emmalee]

Sometimes people will hold a grudge or bitterness towards someone on one single incomplete thought when they have also expressed positives to the same subject matter before. So then it's wrong by not honoring that person for anything else that they say. That would not be fair to you and I'm sorry that this happened.

I completely agree with what you say here, @Greg Sacramento. Thank-you for this post.

 

[punkaddict]

Your emotions will go from "I can manage" following the next month begging for a cure, and it will become a vicious cycle of competing emotions.

Very true, this happening to me on an hourly/daily basis. Usually during the day I say to myself "I can do this (until a cure)" and by evening I'm bawling, thinking it's impossible, wondering about how a cure maybe be many decades away, and how that will lead me to end my life.

Either way, a cure is always on my mind and some times are much more desperate than others. Good on those who can ignore it and live normal lives, but I think I just have to admit it's severely ruining my life, despite being mild, my ASD amplifies everything. I just think of it like a messed up game of Russian roulette, if FX-322, Lenire, Decibel Therapeutics etc. cure or significantly reduce it in the next decade, I shoot a blank. If they do nothing or very little, the chamber's loaded.

 

[JohnAdams]

Huh, sorry, but what kind of support is this? It's almost as if some members here didn't want others to get better.

We are fighting a bad paradigm and trying to get the community to focus on regenerative medicine. If you want TRT and CBT then it is available, go get it. We are saying that it shouldn't be promoted and definitely not funded with research monies in any way shape or form.

If regenerative medicine fails, which it won't, then we can go back to the typical course of non-curative hypnosis techniques.

 

[Henry Orlando FL]

I am a member of the American Tinnitus Association. They recently released a podcast with a psychologist, Dr. Bruce Hubbard, who has tinnitus and specializes in Cognitive Behavioral Therapy (CBT) for those with tinnitus.

In the podcast, he tells you what you need to know about CBT treatment. He says 98% of people can achieve habituation. Sure that leaves 2% unable to habituate. Sure habituation is not a total cure and it sure was a step up for me.

He also has a lot of free resources for those with tinnitus on his website.

He says many people can complete CBT for tinnitus in as little as 2 to 10 sessions with someone who is trained in CBT for tinnitus but unfortunately most therapists are not adequately trained in CBT and don't know anything about tinnitus. On his resource page, he has a 90-minute webinar, a mindfulness meditation audio, recommendations for self-help books (he is working on one of his own) and other key self-help information to give it a go for yourself. He does offer coaching on dealing with tinnitus as well should you need/want that.

I suggest you give it a listen and look.

Hope this helps in some way.

 

[Jiri]

We are fighting a bad paradigm and trying to get the community to focus on regenerative medicine. If you want TRT and CBT then it is available, go get it. We are saying that it shouldn't be promoted and definitely not funded with research monies in any way shape or form.

If regenerative medicine fails, which it won't, then we can go back to the typical course of non-curative hypnosis techniques.

The only bad paradigm I see here is certain members bashing others for actually getting better. If habituation (getting better) ensures one will live long enough to see a treatment/cure, then so be it.

Also, regenerative medicine doesn't ensure anything. Acute tinnitus = a problem of the ear; chronic tinnitus = maladaptive changes in the brain - a brain problem (technology & neuromodulation for the win).

 

[JohnAdams]

Also, regenerative medicine doesn't ensure anything.

I understand that but the emergence of regenerative medicine for the inner ear creates many questions that could be answered more quickly if there was more interest from the community. And you are insinuating that it wont help with chronic tinnitus, and that's another question that needs to be answered, quickly.

 

[Jack Straw]

Thanks for sharing your story.

 

[Jiri]

And you are insinuating that it wont help with chronic tinnitus, and that's another question that needs to be answered, quickly.

I'd be all over the moon, if it helped silence chronic tinnitus. I just haven't seen any data yet (human or primate trials) that'd support that notion. There's not enough available info to draw a definitive conclusion.

I understand that but the emergence of regenerative medicine for the inner ear creates many questions that could be answered more quickly if there was more interest from the community.

If you're talking a community worth of millions of patients, then yeah, maybe. Researchers and clinicians are well aware of hearing problems. It's the lack of funding, and possibly marketing the whole thing.

 

[JohnAdams]

There's not enough available info to draw a definitive conclusion.

It's a very good hypothesis, and supported by people like Will McLean of Frequency Therapeutics. Thus should be rapidly investigated. There is absolutely no good reason why it shouldn't be investigated quickly as a priority.

 

[just1morething]

Also, regenerative medicine doesn't ensure anything. Acute tinnitus = a problem of the ear; chronic tinnitus = maladaptive changes in the brain - a brain problem (technology & neuromodulation for the win).

Sometimes my tinnitus does seem to come from my brain as I usually wake up every morning with brutal noise. It is hard to know. Autifony's drug was targeting the brain, but that didn't pan out as we know. Inner ear and/or brain who knows? We need something other than benzos and gabapentin.

 

[Jiri]

Sometimes my tinnitus does seem to come from my brain as I usually wake up every morning with brutal noise. It is hard to know. Autifony's drug was targeting the brain, but that didn't pan out as we know. Inner ear and/or brain who knows? We need something other than benzos and gabapentin.

I'm sorry to hear that. The thing with neuro drugs is that they don't target only a specific brain region. They affect the chemistry of the whole brain (tapping into its communication system). Did you try any natural anxiolytic?

 

[just1morething]

Did you try any natural anxiolytic?

I don't know what that is? Like Gaba Calm, magnesium, ginkgo biloba etc.?

 

[Jiri]

I don't know what that is? Like Gaba Calm, magnesium, ginkgo biloba etc.?

No no. "An anxiolytic is a medication or other intervention that inhibits anxiety."

Try red wine e.g (just don't mix with the drugs you mentioned).

 

[just1morething]

natural anxiolytic

No no. "An anxiolytic is a medication or other intervention that inhibits anxiety."

Try red wine e.g (just don't mix with the drugs you mentioned).

I don't like wine that well. Did you totally taper off Klonopin or do you still take small doses? How are you doing head noise wise? I'm using hearing aids/maskers plus some drugs and supplements such as b-vitamins and turmeric and sometimes different forms of magnesium.

I only have generic valium at the moment and gabapentin 300 mg capsules. I'd like to get some clonazepam and follow Dr. Shulman's combo again but psychiatrists seem leary about prescribing that. Maybe supplements and HA/masker is the best for now?

I do have a loud click in my left jaw but unsure if that is related to my tinnitus...my guess is no. I have a TMJ/sleep apnea appliance that I wear sometimes when I sleep.