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Scott

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Posts: 313
Reply with quote  #1 
Hi, All,

I've had hyperacusis for a number of years. TRT has been a big help - it's given me a few years of an almost normal life.

I've had a setback since Memorial Day weekend. I'd like to share about it for support. Some of my symptoms are a bit different than what is often posted here, so I thought I'd put it out there for feedback. And, perhaps others have similar issues.

I'm sensitive to both sound and vibration.  It feels like the ear is bruised and anything moving my ear hurts it. My inner ear feels like a jar of water that sloshes every time I turn it. So, turning my head, standing up or sitting down, walking - any movement - I can feel it in my ear. I can feel my footsteps in my ear. Also riding in a car. The feeling has caused nausea- I carry plastic bags in my car just in case. Nausea can come from the car, listening to music, talking to others, moving, etc. Exercise is difficult. My ear feels sore, especially when I lift something. Facial numbness  in response to sound/vibration is another symptom.

This current episode started in a crowded restaurant. I felt something tearing or breaking in my ear- kind of like electrical shocks, then a numb feeling. 

The next day I woke to my ear drum fluttering, and the "sloshing" feeling when I turned my head. And of course sound sensitivity.

I took it easy in work ( I'm a carpenter) - stayed away from power tools - and in a week or so I was symptom free. 

I hopped on my bike, rode a few miles, and realized my ear was getting bad again from the vibrations on the road. By the time I got home, my ear was really bad, and didn't ease up for months.

A CT scan shows no dehiscenence. MRI is OK. Balance testing shows no abnormalities.

So I am thinking this is related to hyperacusis.

In the last four months, I've only had one let up of symptoms, and that started this past week. A friend drove me to the DR - 4 hrs round trip. My symptoms subsided on the way up, and at the dr's , and on the way back. We even stopped at a restaurant for dinner .

So I had a couple of normal days. This a.m., I tried the bike for a few blocks. Symptoms returned by the the time I got back. 

So, anyone have similar symptoms, especially with the vestibular issues? Any wisdom on what is going on?

Much thanks

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Valgirl

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Reply with quote  #2 
Maybe Meniere's? Try posting on the menieres.org forum. For a short time (a few days) I was feeling vibrations in my ear that made me feel dizzy. I also got some pain and numbness in my cheek. It went away. But I do understand what u r saying and do sometimes still feel there is fluid in there moving around. I have been diagnosed with Atypical Meniere's Disease. I also have sound sensitivies, which is common with Meniere's.
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Scott

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Reply with quote  #3 
Hi, Valgirl,

One of the Dr's I've seen mentioned Meniere like symptoms, but couldn't be definite. I don't have true vertigo (where things spin around), which is one indicator of Meniers.

So after seeing two top ranked Dr's, one specializing in balance disorders, I have two shruggs. Apparently this is not one of the standard problems inner ear problems that they know about.

Last night I read the section of this web site on Tonic Tensor Timpani Syndrome. The symptoms seem similar to mine - ear pain, fullness, facial numbness and tingling, dizziness, nausea. Since I have hyperacusis, it makes sense that I also have TTTS.

I'm curious about other's thoughts on this.

And, where to go from here.

Today, I went on a walk with friends, and then out for brunch. I figured " if this is TTTS, I can't do permanent damage to my hearing, so just bear with the pain".

I ended up leaving brunch because I was nauseous.

I can push through pain, but nausea puts a damper on things.

So now I don't know where to go from here.


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Johnloudb

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Reply with quote  #4 
"I'm sensitive to both sound and vibration.  It feels like the ear is bruised and anything moving my ear hurts it. My inner ear feels like a jar of water that sloshes every time I turn it. So, turning my head, standing up or sitting down, walking - any movement - I can feel it in my ear. I can feel my footsteps in my ear. Also riding in a car. The feeling has caused nausea- I carry plastic bags in my car just in case. Nausea can come from the car, listening to music, talking to others, moving, etc. Exercise is difficult. My ear feels sore, especially when I lift something. Facial numbness  in response to sound/vibration is another symptom."

Hi Scott! I've had similar symptoms and then some. Facial numbness right now actually.

My symptoms are related to having had hyperacusis and phonophobia (fear of sound). Too much walking and other exercise can cause hurt ears. i undertand about feeling vibration in the ears too. It called global hyper sensitivity. 

The sensory system can cause you all kinds of weird symptoms and it's not necessarily damage. 

Are you using broadband noise? I make progress by working at exposure desensitization, very gradually doing more, bit by bit, day to day, facing my dissaffections and staying positive. It's slow work. 

Anyway, as very knowledgeable ENT told me, if sounds are causing you all these problems it has to be psychological. If there is something else causing your sensitivities I know what it would be. 

Do you use ear protection often? Do get out of the home much? Do you use sound enrichment at home? Sound enrichment 
 is a pleasant sound you hear all the time, like nature sounds on a nature sound radio or stereo.

"In the last four months, I've only had one let up of symptoms, and that started this past week. A friend drove me to the DR - 4 hrs round trip. My symptoms subsided on the way up, and at the dr's , and on the way back. We even stopped at a restaurant for dinner ."

Okay, car travel is a great form of exposure desensitization. Perhaps you need to get out of the house more? 

I find that taking a long car drive every couple weeks is very helpful to me. Basically listening more to loud sounds the you tolerate well is very helpful with all my sensitivities. Music listening is very helpful too. 

Also, learning not to distress over your symptoms and is very important. Fear and avoidance is the mechanism behind phonophobia. So, perhaps working at gradual exposure to more sounds will get you moving in the right direction.

John

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Scott

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Reply with quote  #5 

Hi, John, 

Glad you posted. I had read some of your previous posts, and also checked out your web site. A link you had previously posted about TTTS helped me see it’s similarities with my symptoms, and led to my original post.

 I have sound generators, and have tried for a balance between being active and quiet. However, when I started with the unsteady feeling in my ear, and getting sick in my stomach my goal became doing the essentials for myself without getting sick. I imagined the Drs would find a vestibular problem such as an infection or fistula, so wasn’t thinking about desensitization. Since the Drs couldn’t find any problems, I’m thinking this is more TTTS.

 I understand your recommendations. I’m not sure how to put it into practice with my work – I ‘m a carpenter and noise/vibration is unavoidable.

 In the past, I’ve worked though the pain and eventually the symptoms would resolve. I don’t want to minimize what I’ve gone through. I’ve worked for years with intense ear pain with power tools, construction noise, driving over bumpy roads on my truck, trying to understand when and when not to use ear protection, to get to a place where my ears seemed to process things reasonably well.

 I don’t see how I can do this again with nausea. Getting sick on one’s stomach puts a crimp into working.

 So perhaps I will give up my business- that is something I am considering. I’d be interested in hearing from anyone else on the board who works in a noisy environment.

 I was so excited about my two days last week without symptoms that I probably overdid it. I rode my bike a little farther than I intended (it was so much fun). But my symptoms came back. I could feel the muscles tighten, but couldn't stop them. I pulled out my guitar and sang a couple songs (not very loudly) , hoping if I did something enjoyable my ear would readjust. But it only made things worse. Same with the walk and brunch today. It was lots of fun, but painful and ultimately nauseating.

 Oh, the difficulties of trying to find balance.

 John, do you think our problem is simply the brain/neural system adjusting to sound? Or do you think there also might be some kind of damage done by sound?

 My own idea is that sound causes some sort of damage, and the neural system tries to adjust to it. So there are two things to work out – the original damage, and all the defensive mechanisms that come into play.

I’m sure there are others here who have read and studied much more than I, so I welcome any clarification on this.

 

And I’d be happy to hear anyone else’s experiences that are similar.

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Valgirl

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Reply with quote  #6 
Hey. I have Atypical Meniere's (no vertigo). I have had periods of nausea and dizziness with loud noises for a couple days. But not true vertigo or balance issues. I also think I had/have TTTS because of my other symptoms. So here's the thing. I do agree there is damage and our systems are trying to adjust. You may also feel fluid sloshing around, as I do with the hydrops from Meniere's. But I also think there is an element of anxiety at play.n I bookmarked that TTTS webpage on my phone. And everytime the symptoms would crop up, I'd read it and do some self talk...reminding myself that this is just my own anxiety and tried to calm down. I stopped trying to avoid noise even when it bothered me. But I kept it low at first....the radio in the car or the tv on low while working at the computer. Plus I can't really hide from noise because I have a Loud two year old and a 13 year old boy who plays drums, guitar and keyboard. My life is loud. Everything still sounds loud and funny and I still feel stuff moving I there but I'm no longer anxious about it or thinking about it. And its bothering me less and less. No more pain in my ears or my face. No more feeling odd on my stomach or nausea or dizziness. Plus Finding others on the Menieres board who were experiencing similar things was also helpful.

Sorry for any typos...on my phone.
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Angie

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Reply with quote  #7 
Hi Scott- I'm really sorry to hear about your setback. I'm new to hyperacusis and ear pain but based on my own limited experience, I'm finding that if I do too much, that is, try and force myself to listen to sounds that are causing me physical and emotional discomfort, I set back my progress. I think if your ears are sore you should rest them, I don't mean to use ear plugs but give the ear muscles a chance to relax.

They say TTTS is caused by or aggravated by anxiety, but if sounds are causing pain to ears that stress reflex will just be reinforced. So I need to work onreducing my anxiety response to things. I'm trying meditation and just to take it more slowly with sound exposure. With TTTS there's a got to be a physical component.. That muscle has been overstressed and the nerve has been irritated.

So I'm taking some supplements too, based on this understanding. For the nerve pain and healing, I'm taking B6, B12, lipoic acid, acetyl-l-carnitine, and Inositol, based on what I read here (http://m.psychologytoday.com/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally). It says nerves take time to heal. I found it really interesting that audiologist said many people start to feel better in around 3 months, and this site says the supplements should be taken for at least that long...

For the muscles I'm taking some amino acids, vitamin C and magnesium (which is a natural muscle relaxant). Ibuprofen sometimes for pain and inflammation. Taking some supplements and drinking special teas for their relaxing properties.

Also, no caffeine, it tenses muscles, and no sugar or alcohol, it promotes inflammation. Lots of foods do-- I recommend checking out the anti-inflammatory diet.

So I don't doubt that a big component of this is a psychological, subconscious reflex, and that that needs to be treated with good positive thinking and a slow and steady approach to sound exposure. But I think that you need to treat your body too.

Peace to you.

Angie
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Valgirl

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Reply with quote  #8 
I think Angie is spot on. I'd add Vitamin B1 to that list. The man made fat soluble benfotiamine one. Its shown to do amazing things for nerves. I am at about 2.5 months now and no supplements yet (just ordered some this past weekend) and doing much better with the pain part. Even some of the sound part is improving. So I'd say three months is a good amount of time but probably a bit longer.
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Johnloudb

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Reply with quote  #9 
 "I was so excited about my two days last week without symptoms that I probably overdid it. I rode my bike a little farther than I intended (it was so much fun). But my symptoms came back. I could feel the muscles tighten, but couldn't stop them. I pulled out my guitar and sang a couple songs (not very loudly) , hoping if I did something enjoyable my ear would readjust. But it only made things worse. Same with the walk and brunch today. It was lots of fun, but painful and ultimately nauseating."

Hi Scott, 

Well, probably be good to chill and relax with sound enrichment, and take it easy with loud sounds for a couple days. Listen to music at comfortable levels. But, treating sound sensivity is all about sound exposure.

You clearly have aversion to some sounds, and maybe lower than normal LDL's (loudness discomfort levels). Probably a good idea to seek out a TRT trained audiologist again. 

 You really need to relax about your symtpoms, and take some short walks that you're confident you can handle for a few days. Then perhaps in 5-7 days try to take a walk as long as the one that bothered you. It may cause unpleasant symptoms but you need to very gradually do more, face disaffections and think good thoughts. 

My dad also had and an anxiety problem with regards to his health, and he was used to taking 5 hour walks up the canyon. He found he couldn't walk more than 10 minutes at one point. He had headaches and nausea and had to quit working for about 4 months. But he did completely overcome it in about 2-3 years.

Anyway, hang in there. I'll reply more when I get a chance. Many people with sound sensitivity have setbacks and they have to start working at desensitization again and work their way back.

John
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Scott

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Reply with quote  #10 
I appreciate all the replies.

Valgirl - a two yr old and a 13 yr old with drums, keyboard, and guitar! You do live loud! How to you do it? Do you use ear plugs? Does the 13 yr old have a room far away from the rest of the house?

Your Meniere's symptoms do seem similar to mine. I'll check out the web site.

How did they diagnose your Atypical Menieres. Were there tests?

Do you take a diuretic for the Meniere's? My dr had me try one, but it didn't seem to make too much difference.

Thanks, Angie, for the suppliment info - it looks like we are all on a similar page. I'm taking chelated magnesium, a methyl B complex, and NAC . I actually started them for other issues. I took the antibiotic Levaquin and had a toxic reaction - nerve and tendon damage. (Don't take Levaquin or any other quinolone antibiotic, unless your life absolutely depends on it!). 

All the advise about sound enrichment is well taken. I live alone, so it is easy to be too quiet. Pandora makes finding music I like to hear easy.


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Valgirl

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Reply with quote  #11 
Haha...no earplugs.  But it is loud here. I was super depressed at first, wondering how I was going to live my life in this loud world.  The only time I felt good, calm and happy was at night, in bed, when it was quiet (despite the mild tinnitus). So, I was wearing ear plugs at first and found that I was getting more and more sensitive to sound.  That's when I also started also getting dizzy and nauseated with sound.  I looked it up.  It's called Tullio's phenomenon, pretty rare, but second leading cause of it is Meniere's.  This was before my diagnosis, and it's mostly about getting dizzy with sound.  But, later my neuro-otologyst said that it can be dizziness and/or nausea.  Anyway, around this same time I also started having pain in my ears, sometimes pain or tingling in my cheek.  Someone here mentioned TTTS, and sure enough I had every symptom of that, too. At that time, I had just gone in to an ENT who thought I had a simple (haha) sudden sensorineural hearing loss but she referred me to the Neuro-otologyst.  Also, here I read that wearing earplugs all the time would make things worse, so I stopped wearing them unless I really needed to.

Basically, Meniere's a disorder that is diagnosed when you have the symptoms and they've ruled other things out. In my case, the dr felt it unnecessary to do an MRI, and used all the tests the audiologist did, plus a few things he did...nothing major.  The thing he did most is listen to me explain all my symptoms. There are many different tests they can do, but he felt like it wasn't needed because sometimes they are uncomfortable and unless it's necessary no point in going through it. There is Meniere's and two types of atypical Meniere's. Mine is called Cochlear Hydrops or Atypical Meniere's. There are several good sites that explain it. I remember I kept explaining the sloshing I'd feel and also this "woosh woosh" sound that all noises had.   Also, things sound distorted and I did have the typical fluctuating low frequency hearing loss.  No diuretics for me, but I have started an extremely low salt diet.  There is no real way to test if it's helped except to go off it, which I don't want to try right now.  I also did a round of oral steroids and an intertympanic steroid shot to the ear.  So, not sure which helped, but it IS getting better. My hearing loss is better and so are all my other symptoms.  Not normal, but improved.  I imagine there is damage in there, too, and now I'm just hoping it improves.  I ordered my supplements, based on a regimen that many there are doing, plus some of my own research.  I'm not planning on using everything in their regimen, but some of it.

Anyway, during my daughter's nap (which is the only time it's really quiet in my house), I put the tv or radio on very low just to keep some level of noise.  I really don't know what my tolerances are, but even very low tv makes my ears nuts!!  It's like it's playing right in my ear.  Ugghhh... 
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Johnloudb

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Reply with quote  #12 
" I took the antibiotic Levaquin and had a toxic reaction - nerve and tendon damage. (Don't take Levaquin or any other quinolone antibiotic, unless your life absolutely depends on it!). "

That's a bummer. My dad took that too and had tendon damage and also tore the muscle in both of his calves while stretching. That was about 5 years back and since recovered though.

About sound enrichment, nature sounds make the best sound enrichment. Listening to music an hour or more each day or anytime you feel like, is helpful, but it's not recommended for sound enrichment. So maybe use a nature sound machine or something similar. I use an iPhone app called "nature sound" on my iphone an it has all kinds of nature sounds that you can even mix together.

" John, do you think our problem is simply the brain/neural system adjusting to sound? Or do you think there also might be some kind of damage done by sound?"

Normal everyday sounds will not cause damage, but desensitization needs to be done slowly or you can make sensitivity worse. Thing is, it sounds like your tolerances to sound are pretty good. If you can listen to a sound like say the motor cycle for a short period even 10 seconds without pain, then it's not hyperacusis causing your sensitivity to that sound. It's aversion. When you have aversion to a sound it can limit both the loudness and length time you can listen to a sound. It's very common for people with sound sensitivities to develop aversion to some sounds.

Anyway, when ears get hurt they need sound enrichment. However, don't completely avoid sounds you can tolerate for a short period.  When you're not up to listening longer you can try 10 second exercises. That is you listen to a problem sound for just 10 seconds, not long enough to hurt you, and evaluate how you feel about it. 

I suggest you read about sound enrichment and TRT exercises here:

http://www.tinnitus.org/sound_enrichment.html

http://www.tinnitus.org/exercises.html

My belief and fear that sounds where damaging my ears, and lack of any insight provided by the doctors I saw, wrecked me. In my mind, sounds were damaging my ears and my symptoms were associated with damage. I was wrong!!! I have had all kinds of horrid symptoms but they non have been permanent. I have no damage and I can tolerate most loud sounds now quite well.

It can be dangerous jumping to your own conclusions about your symptoms. But, what is one to do when doctors give you no answers. Treating sensitivity is all about sound exposure and the sensitivity is the real problem, so you treat that.

John

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Scott

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Reply with quote  #13 
Hi, Valgirl,

I checked out the Vestibular.org website for a description of Atypical Meniere's, and I see the similarities with what I have.

Too bad they don't know what causes it yet. But it seems to respond to treatment.

I was also helped by this fact sheet while on the vestibular web site - it talks about how the brain learns to compensate for vestibular injuries, and the importance of keeping moving as much as possible to help the brain learn to adapt.

https://vestibular.org/sites/default/files/page_files/Vestibular%20Injury_3.pdf

.
Hi, John,

For better or worse, listening to music seems to be helping me, so I'll keep doing it.

Just found a nature sound download online - maybe I'll give that a try also.

I feel like I've had improvement the past week and a half. You mentioned the fear factor . Between the dr telling me he couldn't find anything physically wrong, and having the ear clear up for a couple days helps me relax while doing daily activities, knowing I won't do permanent damage. I fand I am not "monitoring" my ear as much.

I've been getting around more with less problems. I used to get exhausted from just a few hours of activity. It's hard to imagine until you have it how tiring an inner ear problem can be.

Thanks, all. Wishing you a good ear day.
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t9jorda

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Reply with quote  #14 
Hi there, this summer while on vacation every single time we got in the car to tour about I would get green, green, green... no fun at all.  My dear husband had just read some spy thriller book and got this tip from it said "Honey, I know this sounds weird, but try closing one eye".  It worked like a charm but I have no idea why.  It didn't matter what eye I closed.  I have TTS/TMJ on the left side.  

Re: riding the motorcycle with my boss, I found that to be a "trigger noise" for me as well.  So as much as I loved riding,  I felt it was best for me to get my body/ears into a nice long "steady eddy" state before I do it again.  If you were holding a baby, and it howled every time a motorbike went by, you would take the baby away from that situation and reintroduce them later to it, when they were stronger and ready - right?!.    What I am trying to say here is your body is giving you very good feedback loops, and we on our path to wellness need to listen to these messages.  Ask yourself is this a "good" thing or a "bad" thing for yourself right now - your body will tell you, and then you need to listen to it.

I also discovered this weekend that when standing up, with your feet shoulder width apart, and your toes slightly pointed inwards, it takes pressure off the ears.  The Dr. said to practice standing like this 20 minutes a day.  You arms are joined in front of you and you head is bent slightly forward, shoulders, neck, arms are relaxed.  Close your eyes, breath in, breath in again, and one long breath out, repeat.  I found it really, hard to stand still for 20 minutes, you can literally feel your body trying to "balance" itself out.  So I am going to do this as much as possible (i.e. standing in line ups, brushing my teeth etc.).  The Dr. said imagine a person who has a sore hip, and when they stop wearing their wallet on that side, the hip pain goes away.  We may unknowing have adapted our sitting or standing stance so that we slightly lean, so he said to really, really be mindful of that.

I hope this input helps. As I told the Dr. I am in for a buck, something as simple as this is worth a try.






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Scott

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Reply with quote  #15 
Thought I'd give an update.

Ears are greatly improved. Music/nature sounds help a alot. And I've been trying to be as active as possible.

I went on a couple walks with friends over the weekend. I live in the middle of a major fall bird migratory route, so birding walks are a big pastime here. So out I went with binoculars in some very windy weather. The wind was a big timer stress on the ear. Felt a bit unsteady at the end.

I also sanded and refinished a kitchen cabinet for a friend. The sander did my ear in for the day- I just took it easy for the rest of the day.

But on the whole, my ear is much better. It seems the ear uses the stresses as a way to re-adjust. It may not wear down during an activity, but then the next day it is much stronger.

My big problem now is related to the damage to Levaquin. As I posed before, the antibiotic damaged nerves and tendons, esp in my legs and feet. Now that my ear is improving, I am able to be more active. However, my feet are getting sore. I could hardly walk yesterday. So back to PT for that

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Scott

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Reply with quote  #16 
t8jorda,

Interesting, esp about the standing exercise.

This weekend, I met someone with very similar symptoms to mine - ear, balance, etc.

She has found help through a chiropractor. Apparently her problem had something to do with the way she was holding tension, posture, etc.
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t9jorda

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Reply with quote  #17 
Hi Scott,

Topic 1 - BOTOX
I have another tid bit to add to the nausea feeling and something that may help if you have access to it.

I recently when to a Physical Medicine and Rehabilitation Doctor (also called a Physiatrist).  He used Botox on my, using the Vestibular Migraine Protocol to see if it would help with the nausea feeling. It takes about 10 days after the mini injections for it to kick in.

It is working!  

So the million dollar question is why?

Topic #2 Why do my feet hurt too?
In my learning to make myself better quest, I learned that Chinese Medicine says that your feet, reflect your face.  I too had extreme pain in my feet, they too were holding the stress and tension along with my jaw.  Here are the 3 things I did to help that:

1.) Stand on a hard thick book with you toes on it and your feet off the edge... balance and bounce (I did it before bed)... Pick the length of time your are comfortable with.  This will help both your feet and your calves.  And if this hurts like hell, then it means you really, really need to stick with this exercise.  It took me several months, and then my feet/legs returned to "normal".  

2.) Go purchase toe spreaders (from drugstore or yoga store).  I got some plastic ones that I could use while soaking in the tub.

3.)  Kneel so that the your heels touch your bum (and the tops of your feet are flat on the floor), and sit like that for a good 5 minutes. Do this exercise every single day, and don't stop doing it.  Once you have mastered it, progress to the yoga CHILD POSE... This must be done daily.  If you stop, you get worse, trust me, and if you keep it up, day after day, you are retraining your body/brain of how the muscle patterns should be equally balanced.

Why you ask, well.  It is the only stretch I have found that stretches everything in your body at once, safely, and gently.  If we try to apply physics to our muscles, we know we have a pull in our jaw/ear, and there is a corresponding reaction happening in our bodies.  We have to work to rebalance the entire body, not just one part of it... so I have learned.

4.) I also invested in a pair of "wobble" type flip flops/thongs to wear around the house.  It took some getting used to but it helped too.


Topic #3 - Stressful Chiro
Lastly, the chiropractor was the first person I went to for help, he actually made things much, much worse for me.  His procedures stressed my body to increase the flight or fright response.  

Topic #4 - Too much

I think we all have an "indicator" of when we are doing too much (talking, working, listening, any activity).  The trick is whenever that "indictor" gives you a single, you say okay body thanks for the memo, I am going to listen to that and take a break and rest for a bit or stop for the day vs. I am just going to push through this and git-it-done. 


And.. I had chemo do similar damage to me as Levaquin did to you, so nerves do get better with retraining and time.  They remap to different pathways.  What I had to do was "re: train them".  I am still on that journey, but I am seeing improvement by doing the exercises.

I hope that helps a little bit in your quest for wellness,
Calgary-girl


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Scott

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Reply with quote  #18 
I wanted to update you with my progress, and also ask for help.

I started with nature sounds, relaxation, and getting out more three and a half weeks ago. My symptoms rapidly reduced, and then became minimal.

Things were good for about 2 weeks.

Two days ago, I had a setback and the symptoms returned - the unsteady feeling in my ear, nausea, sensitivity to sound and motion.

I had started back to work (I'm a carpenter). I drove my truck for the first time in months. It's a rough, shaky ride. Also worked with some tools. Things were fine. I felt good.

Then drove on an errand that evening, and felt nauseous. Came home, played the guitar, sang a bit (not loud), and my symptoms increased.

Today was the same - symptoms seem to be increasing.

So, my question - what is the best way to handle this? I need to work - I committed to some jobs due to me feeling better. I also need the money.

I don't want to get caught in a cycle of things going downhill.

Anyone have any insight into what is going on, and how to handle it?
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Johnloudb

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Reply with quote  #19 
Well, desensitization needs to be done slowly and it sounds like you tried to get back to fast. What describing sounds likes aversion to sounds and your symptoms are a limbic and autonomic nervous system response to a sound you have aversion to. I can relate. You overcome aversion by very gradually listening more to sounds you have aversion too, and you'll have ups and downs.

Like you mention you haven't heard your truck in a while. When you have aversion to a sound it limits the length of time you can can listen to it. So you have to gradually get used to listening to these sounds again. I suggest you keep using sound enrichment and let things calm down some.

I understand you need to work but it sounds like you can make good progress if you just give yourself some more time. And gradually start facing these sounds that cause you problems for short periods that you can handle and then listen longer as you can. Maybe you start by working one day a week, and work up to doing more?

When you these unpleasant symptoms it important to tell yourself "it's okay, this I'd just temporary" or some other positive thoughts. It helps with retraining.

One problem that a couple people on the message board have had was superior canal dehinscence syndrome. But they didn't experience the same symptoms you do. But might be a possibility.
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Valgirl

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Reply with quote  #20 
Hey. I'm sorry to hear you are having a setback. Again, it sounds very similar to Meniere's because it comes in episodes and attacks. Things will improve and suddenly get worse. I would continue like John suggested but maybe also have a consult with a neurotologist (an ear specialist) who can accurately diagnose it and perhaps offer some relief. For example, there are meds for nausea. I am self employed, and so is my husband, and so I understand the need to get out there and work. Hang in there...
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Scott

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Reply with quote  #21 
I appreciate the replies.

John - it sounds reasonable that I overdid things. I had  been doing some light work, using my mini van to ferry tools. I was feeling good, so perhaps using the truck and doing heavier work was too much. After two weeks of feeling good, it surprised me.

My workload is lighter now, so I can take it easier for a while and hopefully my ear will cooperate.

One of the toughest things about my ear is knowing what it can tolerate. I've had circumstances where I'd think "How will my ear ever handle this". But then my ear would seem to re-orient itself and handle the situation fine. It's tough to know when to pull back and when to keep going.

John and Val - I share your concern that I might have an underlying condition besides over sensitivity.

I've had a CT scan - no sign of dehiscenence. I've been to two otoneurologists, one did balance testing. Also had an MRI. They couldn't find anything. They are not seeing signs of vestibular damage.

The only thing that has had any success has been the desensitization practices related to hyperacusis.


It's a bit frustrating since I don't have an actual diagnosis (other than hyperacusis).  I'd like to have a better idea of what exactly is going on in my head - and hopefully have a better idea of how to deal with it.

Once again, I greatly appreciate your support


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Scott

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Reply with quote  #22 
I appreciate the support I've received here, and here's an update for the record.

I've had in mind to update for a while, thinking "Now I am "Over the hill" as far as recovery. But then I would have a setback.

So I've been up and down. I went back to work with the New Year, doing jobs that generally don't require my loudest tools.

It's mostly been OK. I was doing quite good for a while, then used a louder saw on a job and was set back.

Had another setback this weekend - took a brisk walk, then saw a friend's mom in the nursing home. Between the heavy footsteps of my walk, and speaking loudly to during my visit, my ear was a mess. I was nauseous for a couple days and had inner ear myoclonus each morning.

I'm improved this afternoon. I worked all day, and things eased up as the day progressed.

So that is typical of the past months.

General rule - my ear doesn't get better with long term silence, and it gets better when exposed to sound long term. 

Another example - I worked with a friend the other week. He has a very loud voice. Instead of it making me worse, my ear adjusted by the end of the day.

My other issue is I have TMJ really bad. The last ENT I saw diagnosed it - I wasn't aware of it at the time. I never had jaw pain.  He put his finger in my mouth and touched my jaw. It hurt, so he said it was TMJ.

So I got a mouthguard, which made it hurt really badly. It hasn't stopped since . I eat only soft food, etc, and do exercises.

So now  between the TMJ and the hyperacusis, the entire rt side of my head hurts most of the time. Lots of muscles in spasm. 

Exercises, etc help. I just learn to live with it, and hope it gets better with time.

Best to you all.









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Johnloudb

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Reply with quote  #23 
Hi Scott,

Great news that you've been able to start working again.

I can relate to what your talking about. My tolerances change a lot too and get worse with too much quiet. Ears need practice with sounds.

Though, when using loud power tools like a loud saw it's good to use ear protection, to prevent hearing loss and making hyperacusis worse. Do you use ear protection at all?

Every now and then, say every couple weeks or so, taking a long drive while listening to music can be great for exposure and increase tolerances.

Same with activity, you just have to gradually do a bit more every now and then.

But we all have ups and downs, and setbacks at times. Important to stay positive during these periods. Sounds like you've been doing that.

Thanks for sharing your progress. Good luck!

John
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Scott

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Reply with quote  #24 
I actually use double ear protection - have for years. I'll have foam plugs for normal noise at work, and then will add a headset for very loud noises.
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groovybaby

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Posts: 40
Reply with quote  #25 
I have the same problem, Hyperacusis with pain from vibration. I can hear my footseps inmy ears, I have pain driving in the car especially bumpy roads.

I've had a a million xrays and tests that show nothing.

The only thing that has helped is taking lots of Neurontin. About 2400 to 3000mg per day, everyday.

I also did Neuromonics, that helped the hyperacusis but it is expensive and takes about 18 months to do.

__________________
Ed Gallagher
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Scott

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Reply with quote  #26 
Thanks, Ed. Good to hear from someone with similar symptoms.

The main road by my house is poorly maintained, with cracks every 20 ft or so. Bumpy as all get out. WHen my ears are bad, I take back roads instead.

Last week was a good week, this week not so good. Don't know if there is a connection, but I took Flexeril, the muscle relaxant, last week. Things changed Sunday ( the day after I stopped the Flexeril) when I took a brisk walk. The pounding of my footsteps set my ear off again and there has been no improvement since.

The Flexeril puts my emotions through the wringer, so I'll probably wait until next week and see if I am up to taking it again.

It is tough for me to wrap my mind around exactly what is wrong with my ear. Part if it is definitely muscular. I can sometimes ( but not always) minimize the symptoms by stretching and exercise. 

A classic example of my symptoms was the day I went for balance testing. Two hour drive each way, with an hour of testing involving all sorts of motion. At the end, each step I took down the hall was exhausting - my ear was so out of wack. But then there was a point when I realized the symptoms were subsiding. Almost as if the ear was re-calibrating itself. I was greatly improved on the way home and for quite a while afterward.

So go figure. How do you explain it?




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ontario78

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Reply with quote  #27 
Hi Scott,

I can't believe it but you and I share the exact same symptoms even the TMJ of which I believe is the cause for all my ear issues. I've had the vibration H too and it's always disturbed me. I can feel pain in my ear when walking on very bad days and with ear plugs I can hear a tinkling sound. My most recent symptom is in my other post to you about the hot acid feeling in ear..so awful and painful. I also have made very good progress, rapid, even where all symptoms become minimal and I feel I am on my way to it leaving just for it to be triggered again and in very bad shape within 24hrs. Talking makes mine worse at times and I get shooting pain in ears, though I wonder if that is TMJ or H. I even started thinking today that I was taking flexeril and perhaps that is what led to my quick recovery but I recently stopped it because it was causing my heart rate to increase and then BOOM bad h and TTS and symptoms again!!

I don't feel like I just have H. This started during eating dinner. I feel it to be more muscle/nerve related and H is just symptom of that. I like many others have been exposed to loud noise in my 35 years but there was no single noise event that triggered this.

I have also found music to be the best thing for me to get better where as silence makes it worse (unless I am in pain and I need quiet to get better)

I also attributed my latest setback to exercising and spending time outdoors in the wind which people found odd but I know that is what did it (vibrations?) anyways I am sorry you have all this, but honestly it does feel good to find at least one person who matches most of my symptoms ..In my other group I will post how well I am doing only to have awful setback right away..I frankly won't post again that is how up and down I am anymore..it feels like it's not just H..there is something else going on..maybe TMJ..muscle spasms irritating nerve etc..I have facial numbness too at times.

Anyways, I don't get the nausea but I do get dizziness sometimes, again, I figured it was TMJ..finding balance is really hard, and I don't want to get worse..Have you sought treatment for your TMJ? I will be soon.

Clonazepam helped the acid ear feeling, so that could mean muscle or nerve and I am starting Gabapentin tonight.

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Scott

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Reply with quote  #28 
Hi, Ontario,

As you said, it is no fun having these symptoms, but good to find someone to share it with.

I've wondered whether I have something more than H, also. 

Is your dizziness true vertigo, where the room feels like it spins, and you feel like you'll fall down? Mine is more like a wooshing feeling in my ear - kind of like there is a jar of water in my head and it sloshes when I turn my head, or walk, or bend down. I did balance testing last year, and they found my balance was fine. Which is frustrating, since I wish they didn't find what was wrong. But good, too, since it means there likely isn't something wrong in my inner ear.

THe nausea comes from the wooshing feeling- it's kind of like sea sickness.

I went back on flexeril this weekend. The ear felt better at work today, but I felt so tired and spacey that I came home early. I decided to test my ear, so used the saw for a while, and also the weed wacker. Felt like something rattling around in my ear  when I used each tool. I didn't have ear pain, thanks to the flexeril, but did have an increase in the wooshing feeling in my ear. So now, instead of hot acid, I have that jar of water feeling when I move my head, and a seasick feeling, and the muscles on the side of my head and jaw are tight.

There are two ways that an episode can start. The first is by loud noise or vibration. Then I'll have a numb feeling in the ear, like something is wrong, and by the next morning, I have myoclonus (muscle fluttering), the dizzy feeling, and am sensitive to sound and vibration.
The other way is with a feeling of something tearing, or breaking, or shorting out in my ear, then a numb feeling, then by the next morning, I have the myoclonus, dizziness, etc. The tearing comes in response to a loud sound, sometimes my own voice.

I've seen a few different otolaryngologists, and am always surprised when they say they don't know what is going on. Like you said, it feels like something is either broken, or irritated, or in spasm.

The last Dr I saw diagnosed TMJ. I was not aware of jaw pain before that, but he put is finger into the jaw joint, and I said "OW"! He prescribed a night guard that fits on my two front teeth to ease the pressure on my jaw. Within a week, I had intense jaw pain. THe pain has eased since then, but has never left. Found on the 'net that type of guard can make things worse. So don't try it.

I've done physical therapy for TMJ, which helped a bit. One shoulder is higher than the other from years carrying a tool belt, and from a scoliosis. So they think that puts a strain on my neck and jaw. 
The exercises are designed to balance that out.

I'll have to look into Clonazepam and Gabapentin.

Post how you make out with it









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ontario78

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Posts: 186
Reply with quote  #29 
Hi Scott [smile]
I have always described my dizziness like I am on a boat, an unsteadiness like I had a little much to drink but the room isn't spinning. So flexeril works for you. I would say we have some sort of muscle dysfunction goinb on and I've seen some posts.on the net regarding using flex for tts or myyoclonus with some success. Flex also has some pain blocking properties to it so that may be why you have less pain while on it. I felt it definitely helped me and consider trying half a dose to break this possible spasm. Also if it were tmj which does happen to be more of a whole body issue btw, flex would also be useful for that.

In terms of setbacks, much of the same except I get a fullness first and then I know and like you it takes till next morning for the tts(spasms) to kick in (weird isn't it?!) and of course the major sensitivity and pain starts all over again. This time though while in setback I had an unfortunate accident with my cell phone speaker on max and that is when the acid ear began. Have to say, it's been the worst and most depressing symptom by far and what is prompting me to try the gaba. I am still waiting to do trt, though I am going to try pink noise first.My tinnitus has been alot worse in this setback as well..it's a hard condition, no way around it but I am determined to find some answers. I have found that when my husband massages upper neck the scm muscle, I can feel trigger points in my ear. Have you had chiro work done or massage therapy? If so find one specifically who does trigger point massage and for tmj. Tmj really affect the ears. Keep you posted!

Sarah
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Scott

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Posts: 313
Reply with quote  #30 
Hey, Sarah,

I understand the feeling of being in a boat. 

I've been doing 5 mg Flexeril the last couple of days, down from the 10 mg which made me feel dopey.  I've been able to function pretty well, and the pain levels in my ear are greatly reduced.

However, the sensitivity to motion has increased.  So when I turn my head, or ride in a car, or use a tool at work, my ear feels unsteady, I can feel the vibrations in it, and sometimes I feel nauseous.

It feels like my inner ear is  bruised or swollen, so more sensitive to sound and vibrations.

I'm concerned the Flexeril may be masking some problems - Because the pain levels are down, it encourages me to do things that may hurt my ear?

I don't have much work to do the next couple of days, so will take it easy and see what happens.

I've done chiropractic.  My dr was good and used pressure points, and found that the whole side of my neck and head was in spasm. He was able to loosen things up considerably. I also do massage and pressure points on myself when things get tight. Also a bag of frozen peas to the side of the head for an ice pack.

Physical therapy was good also. The therapist massaged my neck and head, which was like being in heaven.  My body is really extremely tight and misaligned.

Money is an issue for me, since I've been out of work a good bit.  So there is a limit to which I can do these things.

You are fortunate to have a partner which can help with massage. I'm single, so it is more difficult for me to get body work and also to make sure my ear gets enough sound to heal properly.

TRT was extremely helpful to me. When I first tried it several years ago, I had positive effects quickly, like within the first couple of weeks.

With his current episode,TRT seems to be of help. It seems to moderate symptoms a bit by giving my ears something to focus on is not harmful. But so far it has not been enough to pull me out of this episode.

If you are Interested in soothing sounds, I found this website to be helpful.  You can create pink noise, or any soothing sound that suits you, then download it to your computer:

http://naturesoundsfor.me/Rain-Sounds

Scott
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