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SOUNDINHUMANITY

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Reply with quote  #1 
Hello Everyone:

I'm so grateful to have run across this site.  Please help me.  Have LDL of 40 in one ear and 50 in other.  (Insisted my Dr. run this test last week.)   My ENT has me scheduled for a brain MRI, w/without contrast, in 2 days and focusing on the IAC; internal auditory canal.

He wants to check if I have a tumor there because one of my ears has hearing loss.  For years, I've always been somewhat sensitive to loud sounds(concerts, loud motorcycles), but didn't disrupt everyday life...just stayed away from these activities.  Also tinnitus, but that never bothered me much either.

About 7 weeks ago, on Amoxicillan for 7 days then Bactrim DS for 10 days and that's when everything changed.  The hyperacusis started right after starting the Bactrim.  Looked it up and think it put me over the edge...toxic to maybe the cochlea or increases tinnitus?  (For me, I figure sounds are twice+ as loud as usual.)

It's terrible and my ENT doesn't take sound sensitivity seriously.  What a change in my life.  I never knew this condition existed.  I thought when you get older (61), people get hard of hearing...not that all sounds are too loud.  (I feel like I'm a character taking part in a horror movie.) 

Anyway, found an MRI with the noise reduction enhancer and wearing screw in type ear plugs -27 db.  ( Can't get a good seal with the foam ones.)  Also, the clinic just got some smaller ear muffs that's suppose to fit under the "birdcage/brain insert" in the tube.  Ordered a MRI muff -20db over the net, so will bring that too. 

Had a brain MRI a year ago, (just wore plugs), but didn't have sound problem as now.  I've read horror stories about your condition worsening after MRI.  I need this MRI, but scared that even with plugs, and hopefully, can squeeze muffs under cage total -47db, that it will make my condition worse after I climb out of that tube. 

(It's so lonely.)  I did order the pink noise CD, and I wish there was a treatment center near me.  Chicago is closest (150 mi.).   Even if I could make it; my insurance won't cover, and don't have cash.

Any info I would appreciate.  THANKS.  (So scared.  Life sure changes fast.  I've had cancer/surgery/chemo and that was mute compared to this.)






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saab1216

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Reply with quote  #2 
Dear sound,Just a little positive input here. Last year I had a case of Hyperacusis (sound induced). I had an MRI without proper headphones.It didn't seem to worsen my already debilitated state.I also as part of my Job requirements qualified with the use of firearms using 35db rated plugs along with earmuffs(coupled together) I had no setbacks afterward. I shot a 12ga. shotgun and model 38 revolver for at least 15 to 25 minutes.If I could handle these sounds,I am confident that with earplugs you will do fine.There is hope as My hyperacusis is almost completely gone but i do have soft sound issues with verbal sounds.It is no big deal compared to what it started as.My ldl levels where around 60 to 70 db,which is a bit higher than yours but,I probably started out before testing at 50db limitations.TRT is a very good type of therapy to begin. It is all very scary but you are not alone and there is help for you here. Take care Paul
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Jennifer

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Reply with quote  #3 

Hi,

I actually have a different take on this. I don't think that you can make such a decision based on anyone else's experience unless they have the exact same LDLs as you. Having LDLs in the 40s is pretty low and puts you in the "severe" category. And adding ear muffs when you're wearing ear plugs isn't going to give you additional protection that equals the decibel protection that the ear muffs are rated for. It doesn't work that way. My understanding is that the most protection you can get from both ear plugs and ear muffs is something like 35 decibels.

I am actually in the same boat as you. I have severe hyperacusis and am need of an MRI, but I know that there is no way on earth that I could tolerate the sound from an MRI right now. I was actually just looking into a MRI machine near me with noise reduction technology and was told that it goes up to 98 decibals! This would be VERY loud for you or me. And an MRI with and without contrast takes a fair bit of time.

I wouldn't think that hearing loss would normally indicate a brain tumor, but on the other hand, I'm not a doctor and I don't know your situation like he does.

If I were you, I would get a second, and maybe even a third opinion regarding whether you need an MRI right now.

Good luck,

Jennifer

 

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SOUNDINHUMANITY

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Reply with quote  #4 
Hello:

Thank you for both of your responses.  (I feel so intimitated by my ENT.)  I've asked lots of questions, but I can only go through his nurse.  I had some plaques on my brain for many years, but they say they're not in the area where MS usually is, but won't rule out demyelination.  I really would like to see if part of my problem are changes or multiplying of my plaques, especially with my cancer history. 

Jennifer my thoughts are as yours.  As you stated this machine gives out approximately 98db's, and if my tolerance is twice that approx. 200 with my 40 & 50 LDL's, then if I have -27db's plugs & -20 if I can get the muffs on top of that in the cage...then the way I see it if, I'm still exposed to 150db level for a period of time with/without contrast.  Am I figuring this right? ( I think I am.)

I'm very worried that my problem will worsen.  I feel like I have no voice and 48 hours is passing fast.  I don't see how I can get a second opinion at this time.  It took awhile for my insurance to even ok this, and feel  my doctor would probably dump me.  He even said I shouldn't go on the Internet for research.  As if I don't have a brain, and can't decide which sites are valid...

I could see asking for another opinion after the MRI, but then the damage?  There is one neuro/ENT in my city and that would be the dr. that I would make an appointment with.  My "gut" feeling all along is not to have this.  Life is so complicated at times.

Again, thank you both for replying.  It's nice not to feel so alone. 

Ruthie 
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Marilyn

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Reply with quote  #5 
My opinion?  Go with your instincts.  Every time I don't, I regret it later.  I haven't looked on the drug list, but were the medications you just took ototoxic?  Wishing you the best.


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Jennifer

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Reply with quote  #6 
I agree with Marilyn. If I were you, I would go see the other ENT. It sounds like the ENT you have is one that you could do without anyway.

Also, if you decide you need the MRI right now, you might want to look into getting on an anti-seizure drug such as Neurontin before you have it. There have been reports here that this type of drug has increased people's LDLs while they were taking the drug.

Take care,

Jennifer
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SOUNDINHUMANITY

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Reply with quote  #7 
Hello Again:

Thank you for the postings...appreciate the excellent advice and support!

Drove downtown to my ENT's office this PM, didn't have an appointment, but asked if I could talk to my dr's. nurse.  Went very well and told her again how last week's testing of my LDL rates 40 & 50 (severe), that I was very hesitant to get the MRI Thursday, because didn't want sound level to deteriote more.

She said she'd talk with the dr. and would call me later.  She called and said that the dr. told her that my condition would not worsen by having the MRI.  I asked her if he could guarantee that and she said no. 

Anyway, found out the other dr. in town, was not a neuro ENT, but a specialist that strictly deals with the ear.  I'd love to see him and my ENT said they'd gladly send my hearing tests and info to him for a second opinion, but would take 2-3 months to see him, and that their office couldn't call to see if I could get in sooner.

Tomorrow I'll call him, and set up an appointment, 2-3 mo's away, but I have to make up my mind tomorrow to cancel or go through with Thurs. MRI.  I'm so torn.  I keep remember reading...like a warning...don't submit to a test that has higher noise levels than your LDL. 
 
Also, Marilyn mentioned above if I had taken any ototoxic drugs.  Two months ago the ENT put me on a sulfonamide antibiotic for 10 days and 24-36 hours after starting the med, my ear and sound sensitation started.  Looked it up and is ototoxic. 

And Jennifer mentioned neurontin.  Have you tried it?  I did read that, that has helped some people with H. (I'm so new to this.) 

If I do have the MRI and my levels drop lower into the "profound level" is TRT or pink noise therapy out?  Does it disqualify me for any help? 

Thanks again for responding!  Ruthie


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saab1216

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Posts: 95
Reply with quote  #8 
I believe that the warning for an MRI was too wear hearing protection period.With that in place you should be alright!If you feel any discomfort during the test,they can discontinue.It is a series of bangs clangs and weird guitar sounding pitches. Nothing high pitched but loud pulsation. If I survived a blast of a shotgun,you will survive this.shotgun is about 140db. p.s. learn how to properly fit plugs in your ears THIS IS VERY CRITICAL! a good seal is paramount. In the meantime,the pink sound protocol will help build up your tolerances in the two month waiting period. This is what I did.I waited about the same period of time to see a hyp.specialist.By that time my ldls were 70db.
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Paul H
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cbBen

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Reply with quote  #9 
If you do get the MRI, go to a quiet MRI facility if you can.  May as well get a quieter test if possible.  

But wait a minute.  Are we testing for MS, acoustic neuroma, or something else?  If it's MS, I would verify whether MS is diagnosed by MRI in the first place.  If it's acoustic neuroma, how important is it that you rule it out?  Weigh the real-world chances you have one, the real-world chances they will actually do something about it if you do, and the risk to your hyperacusis and potential fallout therefrom.  I can understand why a doctor would want to test for acoustic neuroma:  so you can't sue him or her in the ine in a ???? chance that you actually have one and he or she neglected to test for it.  But the question is why would you want to test for it.

Opinions differ of course but I am of the view that TRT is much more likely to be tolerated by, and to be of help to, a moderate hyperacusis sufferer than a severe sufferer.  I do believe you can make things a lot harder on yourself by setting yourself back LDL-wise and pain-wise.  That said, I have had two MRI's (both at a quiet facility) with no immediate fallout.  But I do believe they are not without risk, even with foam plugs.

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janepm

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Reply with quote  #10 
the two drugs you mention, I am fairly sure they are ototoxic, take a look a the list that Dan provides on the site here, most antibiotics will cause some ear problems which usually take awhile to calm down.

As for Neurotonin, I looked into that some years ago and found the side effects were not to my liking.

I find at least for me that I have to be careful about foods, rx's, herbs, etc. and if I have too much sugar or too many carbs (love both!), I have problems with my ears.

In time, we all find out what we can and cannot do and of course we can't live in a vacuum but I think for me, it's a matter of finding the least offensive thing.

I would go with your instincts too if you haven't already! You should never feel intimidated by a person helping you. There are choices, thank goodness.

Happy Easter to you and everyone else. May we remember the reason for this Season more accutely.

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Jane
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janepm

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Reply with quote  #11 
oh forgot, on the mri, sorry, I found that I would take my own earplugs and practice putting them in. Some facilities are starting to also supply ear muffs but I take my own too. Check ahead of time. Plugs only for me were not enough and I find with both plugs and muffs, I have no problem. The higher strength mri's do the job faster and sometimes are closed mri's. I close my eyes the whole time and pray and think about other things and sometimes they provide music to listen to!
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Jane
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bartony

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Reply with quote  #12 
As for Neurotonin, I looked into that some years ago and found the side effects were not to my liking.
 
That's usually a neurologist's pet drug to try to give for every problem.  I'm afraid of that stuff too, Jane.

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John 3:16-17
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SOUNDINHUMANITY

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Posts: 20
Reply with quote  #13 
Hello:

Thank you so much for all your helpful replies.  (This is such a great site!)

MRI Update:  I decided to have my MRI last week.  My ENT said, that even though acoustic neuromas are rare, because of my criteria of asymmetrical hearing and accompanied by tinnitus, he wanted me to get the scan.  (Reading about these:  They're benign; but nasty!  I can't believe all the problems people have after treatment.  Feel bad for them.)

I got in at the only noise reduction feature, MRI machine, in my city, and got the tech to double down on both plugs and muffs.  (We got the muffs to fit under the braincage.)  I really appreciate the great article on this site about how to properly fit ear plugs, so helpful.  I still couldn't get a good fit with the foam ones in my R. ear, no matter how I tried...must have a crooked R. canal.

I found some rubber-like plugs at a local drugstore, that are shaped like a screw (-27).  It took me a little time to get R. one in, but I really felt for the first time, that I had both ears sealed good.  Also, bought a 2nd. set.

I bought some MRI muffs (-20) on the Internet, but the MRI clinic had just gotten a new pair (-14), and used them because they had the PA system attached.  A total of (-34 db).  It was uncomfortable at times with the noise, and I feel that my LDL's probably went lower then my 40 & 50, but got the scan.  My ENT's nurse called me yesterday and said the scan showed no tumor.  (Grateful!)  I should get my copy in the mail tomorrow.  In a couple of months, hope to get in to see the only ear specialist in my city.  He's the one that does the neuroma surgeries.  Plus, I want his office to do my LDL testing.

Now, focusing on properly using my "pink noise CD."  Thank you Dan for sending it out so promptly, and for founding this network.  (You're an Angel!)  I read the instructions many times, but still worry about setting the volume correctly.  My concern is, with my one ear having a hearing loss, and the other one normal, what volume do I play it?   (One ear - CD noise too soft, other ear too loud?) 

Anyway, in a couple of days, I'll start a new post about the CD playing.  ( I need all your expert advice.  I don't want to mess up.)

So glad for this site that you're all out there.  I don't feel so alone.  Ruthie

P.S.  Since this site began has anybody, or groups of us, ever gotten together to meet and chat, like if you live in the same state or local? 
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nomad

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Reply with quote  #14 
Hi everyone.I am the newest member,just signed up.I am sorry to have to use a reply mode to join in but I haver never used a blog/message board before and I need someone to explain how to post my first message.
I chose this post to reply to because I am also feeling very firghtened,and am very glad to have found this network.I live in the UK so we are years behind you as usual with regard to the professions taking this diagnosis seriously.
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aQuieterBreeze

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Reply with quote  #15 
To start a new thread -
On the "new messages" page - (see the link for it at the top of this page)
Click the link  on the right ,  at the top or bottom of the page -- that says "New Topic"
Remember to give it a subject line.
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Marilyn

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Posts: 194
Reply with quote  #16 
Quote:
Originally Posted by cbBen
If you do get the MRI, go to a quiet MRI facility if you can.  May as well get a quieter test if possible.  

But wait a minute.  Are we testing for MS, acoustic neuroma, or something else?  If it's MS, I would verify whether MS is diagnosed by MRI in the first place.  If it's acoustic neuroma, how important is it that you rule it out?  Weigh the real-world chances you have one, the real-world chances they will actually do something about it if you do, and the risk to your hyperacusis and potential fallout therefrom.  I can understand why a doctor would want to test for acoustic neuroma:  so you can't sue him or her in the ine in a ???? chance that you actually have one and he or she neglected to test for it.  But the question is why would you want to test for it.

Opinions differ of course but I am of the view that TRT is much more likely to be tolerated by, and to be of help to, a moderate hyperacusis sufferer than a severe sufferer.  I do believe you can make things a lot harder on yourself by setting yourself back LDL-wise and pain-wise.  That said, I have had two MRI's (both at a quiet facility) with no immediate fallout.  But I do believe they are not without risk, even with foam plugs.


I wholeheartedly agree, Ben.  You voiced my opinion exactly.

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aQuieterBreeze

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Reply with quote  #17 
Hi Ben,

You mentioned -
Opinions differ of course but I am of the view that TRT is much more likely to be tolerated by, and to be of help to, a moderate hyperacusis sufferer than a severe sufferer. 

I think that is part of why the clinician one goes through for TRT can sometimes make a big difference...
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Marilyn

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Posts: 194
Reply with quote  #18 
I'm a severe category 4 hyperacusis patient.  TRT has already helped me tremendously, and I plan on being one of the success stories.   I only got my wearable sound generators last week, so I've only just begun.  4 months of working to improve my LDL's and music therapy has already made a big difference in my life quality.

Yes a good clinician is important, but the time spent in the doctor's office is short.  They can't do it all for us.  The patient must educate him/herself and follow through.   (Like we are doing here.)  To me, learning about my limbic and autonomic systems have been huge.  That's why John always says to think good thoughts about sound...he understands how negative associations can have such a negative impact.  (Thanks, John.)

As for the cost of TRT --- yes, a couple of thousand dollars is expensive.  There are other options available to people.  The pink noise CD listened through an open ear headset, and perhaps spending a hundred dollars or so in TRT books to educate yourself, is an option.

Also, what's the alternative?  Neuromonics?  More expensive, and possibly works better for tinnitus than hyperacusis.  Medicine?  Tried that.  That's all my wonderful (haha) ENT doctor knew to do.  I'd take a round of prednisone each year before Thanksgiving and Christmas and every summer.  That would see me through the family visiting, then I'd be wiped out from pain a month or two.  After taking predinsone two or three times, it didn't work anymore.  So, I tried Gapapentin last summer before we visited the grandkids.  That worked 2 months and then only a bigger dose would take the edge off the pain.

Hyperacusis is a problem with our brain processing sound.  In my opinion, TRT is the best option for me because it hits on the principles necessary to retrain and relearn how to process sound. 

{[Stepping down off my soapbox.]}

P.S.   I also work at relaxing and good nutrition. 



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