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Kribu

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Reply with quote  #1 
Yes, it's panic time again. Everyone asking "Why aren't you better yet?", me thinking, "Am I missing something?" Well, after reading the incredibly helpful *READ IT* (if a bit technical) paper "An Integrative Model Accounting for the symptom cluster triggered after Acoustic Shock"  I thought, I need to find a doctor who could read this and say, "Oh, yeah, I know what they are talking about."  Well, I've made an appointment at The Brain Center in Hudson OH.  After significant disappointment with the Tinnitus Management Clinic in Cleveland, I was hesitant to strike out again.  But after talking on the phone with the Dr. who would actually handle my case, who pulled up the research as we were talking, and understood all the processes and lingo within it (therefore, we could have a productive conversation), I booked it.  Worker's Comp will just have to catch up.  (again). 

I want to query you folks if anyone else has found "integrative neurology" specialists, and your experiences (pos or neg) with it.

BTW: going on two years, hyperacusis, exacerbated pre-existing tinnitus, ptsd (related) For newcomers, hang in there.  There ARE folks out there who care, and some are even providers!
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Margy

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Reply with quote  #2 
Wow! I can only imagine talking to someone who can understand, and read, the very detailed and difficult article that explains this problem so well.

I have read through it and bookmarked it and wondered if I could ever find someone who knew neurology and was also willing to read and consider this.

You just might get some good answers! Let us know how it goes.
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Kribu

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Reply with quote  #3 
So I had my first exposure to Integrative Neurology today. WOW...ok, this Doctor does a lot with concussion patients, but also has had hyperacusis and tinnitus as some of the symptoms.  Best of all (in my opinion) he is curious, investigative, and holistically applying knowledge of various neurological systems and how they all interconnect or are interdependent.  For example, instead of putting sound in my ears to see what happens,(I squirm, I grimace, etc)  he's working through the vestibular (balance) and occular (eye)systems and cerebral cortex (thinking) to try to narrow down where my connections have gone awry.  Some of the hyperacusis and tinnitus changed slightly (volume, sensation, or type of sound) depending on the various tasks I was asked to do or positions of my head.  He is transparent that change--whether positive or negative--is information that will guide further treatment.  Everyone is different, and every day is different given so many "life" variables.  He also takes into consideration fatigue--neurological (he is getting clues about location of "glitch" (i.e, middle ear, inner ear, nerve branch X, etc) from my responses (left eye jumps when I try to X, balance is better after doing excercise Y) and switching up stuff or giving a break to work or explore a different area/system. What did I do? video "games" (ok, not games) for eye tracking, movements across the midline, "complex" body movements while eyes track a particular path, I have to say some of it was quite challenging yet so simple.  My brain was definitely "working out", and (as I call it) finding the "back door" into the "messed up parts" to strengthen or calm down (depending). Something very different: Laser treatment.Applied to various areas of head, neck, ears.  Sounds weird, but actually felt like very subtle stream of water rippling through my head depending on placement of laser.  Not like tuning fork (surface-ey), this was THROUGH my head.  Interesting.  I spent basically most of the day there, and he started talking about nerves and systems and stuff, and I recognized some of it from the paper I sent him...so he was using it.  He was very positive and excited about the paper's content.  I'm tired now, (its a 2.5 hr drive one way), and back again at the end of the week.  I have homework exercises to do--in specific order and need to track any changes (or not).  My ears aren't worse tonight, so that's a plus.  If interested, check out https://thebraincenterohio.com I'm hopeful.  If nothing else,its interesting and reassuring to "figure out how my brain works".  I'm hoping it might be a candle in the window for others here.
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rodmccain

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Posts: 210
Reply with quote  #4 
Is there a link to "Read it"  Plus I would like to explore this with someone in the Houston Area.  Any referrals to a neurologist in Houston.
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Kribu

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Posts: 43
Reply with quote  #5 
I just googled Integrative Neurology in Ohio, for my search and lucked out. (not just plain Neurology) You might want to try that. My doc said there aren't many doing this approach.  I can ask at next appointment if there is a centralized organization for them.  *Update* My doc is seeing things with visual processing vs auditory processing is not in sync (should be), and doing things to optimize various systems to better compensate for problematic areas.  Slow going, but again, I just started.  I hope I can do a better job explaining it all (on this site) once I get a handle on it myself!  Best of luck to you!
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rodmccain

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Reply with quote  #6 
Hi Kribu,

What are your symptoms?

Do you have any HEARING disorder with the T, such as all environmental sound actually amplified?  I have not read this thread, but only your post.  I am assuming you have sound induced pain though??


Thank you
Kathy McCain
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Rivers

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Posts: 10
Reply with quote  #7 
Here is link to article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190/
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Kribu

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Reply with quote  #8 
Hi Kathy, IFor me, anyways, it's not that my hearing has become more acute--it's more like certain sounds now have aspects that are painful or irritating.  Like putting a coffee cup into the microwave.  Normally that won't hurt, but I wince if the cup hits the glass turntable "just so". yes I have moderate to severe sensorineural hearing loss (bilateral) with tinnitus and recruitment since childhood (spinal menengitis).  It wasn't until adulthood I started wearing hearing aids.  That being said, my injury didn't change my hearing loss.  Just the sensitivity and ability to tolerate sounds barely over my threshold.  For example, I don't hear a particular tone until it is turned up to 60dB.  (Note: dB =volume)So my hearing aid would adjust for that and I would "start" picking up sound at 60 dB, but now, I can only tolerate an additional 10-15 db before experiencing discomfort or pain so I am unable to wear my hearing aids at the present time-and hence can't return to my job.  (A normal hearing person can usually tolerate loud sounds of 100 dB) I used to be able to tolerate very loud sounds without PAIN. Not anymore. I pick and choose my exposure now, earplugs always handy. But sometimes its just too exhausting trying to follow conversations so I avoid many environments. My hearing aids had me functioning quite "Hearing" for several decades.  I didn't realize how "Deaf" I really was without them! (My husband is Deaf so I use sign language at home) That being said, I may have a benefit because I DONT hear all the sounds in the environment. I can go outside, and get around, but sometimes I pay the price.  My tinnitus has also been affected.  Instead of mild cricket sounds, I now get an overlapping and changing sympony: crickets, tones (high pitch and low-near and far), hissing like a steam radiator, buzzing like a mosquito, squealing like air escaping from a pinched balloon, and when really ramped up, horns, phantom voices or music (never intelligible--which tells you it's not hallucinations LOL) as if they were down the street, or one floor below.  I've been woken up by them.  Also I've been woken up by a sharp stabbing pain in my ear.  Like someone just jabbed a stick in my eardrum. I have nightmares where I'm in the environment where the injury took place (call-center), and I'm stressed out for various reasons--wrong equipment, not ready to be back to work physically, being judged by collegues and bosses, etc.--all my psyche's way of trying to deal with it.  Panic attacks have happened when I am in situations I can't escape from painful or irritating sound.  Recently, I was in waiting room for doctor, and construction started in the office next door. It took a few minutes of growing agitation and sudden desire to burst out crying when I realized that was the exact feeling I had at the moment of injury (but I had to keep working!).  Now I realize it was a panic attack, but it is hard to notice when you are in the moment.  I hope these descriptions are helpful.
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rodmccain

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Posts: 210
Reply with quote  #9 
Hello Kribu,

Thank you for your post.  I am so very sorry for your troubles!  It must be very challenging.  I have no hearing loss.  Everything is amplified, like I need a reverse hearing aid. Very rare from what I understand. The T is severe as well. 

I wish you all the best, and hope you can get some relief!  Please keep us posted with your progress.

Kathy Mc


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Johan_l

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Posts: 21
Reply with quote  #10 
Hope you can get help. I think this article gives details about the nerve block case study mentioned in Norenas article. Might be worth bringing up

https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain
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