I have not been overprotecting by any means since onset 5 months ago. I have barely used ear protection, however I have limited my environments (not working, no restaurants/bars) and I only drive when needed. Therefore, I have been letting mild-mod sounds in, and sounds that are “constant” like heating system, fridge running, yet reactivity has not improved…
Therefore, my biggest question to her today was “if ambient sounds in my home environment that I have let in without protection since the beginning have not improved my verrrry sensitive spiking/reactive tinnitus, how is the in ear sound generator going to provide different results?”…
She thinks it’s about finding the right sounds and having them presented in a constant manner that don’t change from room to room that will best impact the brain to help desensitize and breakdown the “overly excited and easily influenced” neural pathways that create reactivity…
She has been doing this for 11 years, she works for university of PITT/UPMC, yet she did share she called her colleagues to discuss my case because she has yet to have a patient describe their reactivity as sensitive as I am. Cool, great! Not. I told her others probably feel this will only worsen them or not work, or maybe I’m the only one in Pittsburgh like this -_-
Good news is I may get some coverage for devices through OVR, they have had luck with that from other patients so that would be great. Other than that, living on a freaking prayer as always.
She did say there is always a strong emotional/PTSD component attached with reactivity. She didn’t say it’s causing it, but since it is all in the brain and tightly connected through heightened sensory awareness/fight or flight/always on guard, these areas can definitely play a role in how the brain is overreacting to noises.
Overprotection is a baseless myth/lie. Please reconsider TRT as in your case (reactive tinnitus) blasting your ears with white noise might very well make you worse.
Reactive tinnitus has absolutely nothing to do with emotional reaction or PTSD. I am sure she is very knowledgeable in other areas, but what she is saying is absolute malarkey/BS. Reactive tinnitus is related to severe somatic crossfire and closed potassium channels. If she doesn't know these facts you shouldn't even listen to her.
Her very incorrect opinion about "finding the right sounds and having them presented in a constant manner to influence neural neural pathways" is baseless quackery. There is no such thing in the scientific world. The only thing that even comes remotely close to what she is saying is residual inhibition, but no one knows how that works and it has nothing to do with TRT/sound therapy.
I've been researching tinnitus for over 2 years, ~10 hours a day and have read every paper in existence on the subject. Please reconsider TRT as it isn't a swell idea for reactive tinnitus. Too many times have I seen people plummeting into insane suffering due to the arrogance and inaptitude of these so called "tinnitus specialists". Please take care.
@AnthonyMcDonald I can appreciate your research and sharing as I know you yourself have dealt with/deal with reactive tinnitus. I told her right off the bat I’m not going to be someone using white noise, I have learned what does “mix” with my T and what doesn’t, and I refuse to do the sounds that don’t.
@AnthonyMcDonald the device I would get would be sync’d to my phone, therefore I could use any type of sound I wish. I would also no “blast” any sound by any means. As there are stories where it didn’t go well for some, others experienced improvement. So, I’m willing to see what if would be like, especially if it gets covered financially.
@AnthonyMcDonald please let me know what you have done and found to give you improvement? If it’s just time, I can understand that may just be the key thing, time. However I am a firm believer there’s something else that could possibly help with the pass of time, and I’m willing to try things that others have seen help them.
@ErikaS There is absolutely no research that points to sound therapy in a positive light. I've read every paper in this topic as well. It does not in any way affect hyperactivity in the DCN. All the research I've read actually shows sound therapy to make tinnitus worse. Yes, time and silence is what helped me. And protecting as much as possible.
The "85%" that these "specialists" so boldly claim to be the statistic for improvement 100% coincides with natural remission/habituation. Correlation does not imply causation. ~85% People (with mild stable a tinnitus, which is the vast majority) get better with time (this is shown in numerous research papers) and these specialists automatically assume it's the sound therapy that has achieved these results.
It is a fact that TRT is done to help people habituate. Pawel Jastreboff states this himself. Sound therapy does not decrease tinnitus, time does (in some cases, natural remission) and anyone who claims otherwise is a liar/inept.
So yes, for some poeple TRT definitely can help, but it's in no way, shape or form, from what I've seen in my research, better than CBT for anxiety or standard of care. And, in my opinion, knowledge, and experience, is absolutely useless in regards to reactive tinnitus. I've only seen sound therapy make reactive tinnitus worse. It's an unfortunate truth you have to accept.
"In this randomized clinical trial of 151 participants with 18 months of follow-up, average tinnitus distress decreased in all 3 groups. There was no clinically meaningful difference in extent of reduction in tinnitus distress or other important end points among patients in the 3 intervention groups." - (Effect of Tinnitus Retraining Therapy vs Standard of Care on Tinnitus-Related Quality of Life)
Not everything is doom and gloom, though. Susan Shore's device shows massive potential, as well as potassium channel openers. So things are looking up.
@AnthonyMcDonald I truly hope SS device can help those who aren’t purely somatic. And I don’t have 1-2 straight non-changing tones that can be consistently matched to play my T sound, so I can only hope her device can reach a variety of T people and make a difference.
If you try, be careful and pay attention to any increase in tinnitus intensity. We, with reactive tinnitus, won the lottery omg. I think the TRT help «decrease» the T for some people because it helps them to habituate, they stay calmer and consequently the brain stops focusing so much in the sound. Like @AnthonyMcDonald said, most of these people also get better naturally, but they attribute to TRT.
I agree with Anthony here. From what i see you got your T not a long time ago so i would first give it some more time and try to get some natural recovery. And like you said she has yet to see a patient with the same reactivity like yours.
@AnthonyMcDonald can you point me toward the literature about somatic crossfire and closed potassium channels ? I want to better understand this. Thank you.
I like you asked the same question. Why hasn’t constant sound improved my reactivity? I was told the brain focused on too many different sounds vs a passive sound. I just got worse lol
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