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kimberleydust

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Posts: 91
Reply with quote  #1 
Hi All (get your coffees this could be a long one!)

I am new to this site but not to Noise Sensitivity. I have been extremely sensitive now for nearly 2 years. I have never been assessed or had any tests done as I live in a remote part of Australia and only get to Perth every 6 months, which is pretty traumatic for me and so external visits outside of our motel room is limited to what is necessary.  I have a benign brain stem tumour and have to go for 6 monthly MRI's (yes I can just see everyone cringing here!). 
The extreme sensitivity started 5 months after I had completed Radiotherapy to the brain stem.  My all time question is: has RT caused hyperacusis?  The closest response from any doctors is 'quite possible - anything can happen where the brain stem is involved"  However no further testing has been offered and my Neurologist won't have it that it could be the tumour causing it - he has seen me in a very distressed state one visit to him due to doors banging at his rooms and the clackety clack of the receptionists typing, yet all he did was refer me to a psychiatrist.  I haven't been back to him since...

At present I am extra sensitive, over and above what is 'normal' for me,due to having had recent over exposure (was happy to read that this is part of hyperacusis) and this is really causing me to get depressed about it all (which I fight to keep at bay anyway).  I empathise with everyone here as to how it affects our lives so dramatically and so hard for others to understand the extent of it...

I think I differ a little from the majority here in one aspect as to how my body responds to certain noises and I think this may be because of the cause of it for me - ie the tumour and RT  being the cause therefore has other effects not common to most....(hope that made sense?).  If the noises are sudden, loud or sharp and unexpected they have a profound effect on my nervous system and cause the right side of my body to have uncontrolled movements - by this stage my nervous system is on high alert and hypersensitive.
The other difference is what I don't have - most here seem to have this - which is the pain and sense of fullness in my ears on delivery of noise.  Neither do I have tinnitus apart from the very occasional and short lived episodes..

To give you some idea as to the level I am affected I will attempt to explain the type of noises and situations that are bad for me...
Probably the worst noise of all is a rooster crowing - I have a great fear of this because of what it does to me.  Next to that would be doors banging and kitchen clatter - crockery and metal clanging together.  Power tools, lawn mowers, road works etc are bad...when I am extra sensitive like now even normal road noise is too much.  Peoples voices if loud or high pitch are bad.  Any loud sudden bangs.  Not only do these cause immediate distress and reaction but long term fatigue and sensitivity.  At the moment I am in a very self protective mode and won't go out of the house without ear plugs or muffs on. 

Due to my brain tumour I have been hypersensitive to other stimuli since diagnosis in end of 2006.  (the noise sensitivity however didn't get real bad until July 2008 after RT).  I am very sensitive to light (especially fluro) which makes the noise sensitivity worse and vice versa.  I don't function well in highly stimulated areas like shopping centres etc and didn't before the noise sensitivity came into play.  My husband says I have always been a bit sensitive to noise, preferring quieter environments, however nothing like what it is now. 
I also have balance issues which are worse in noisy, stimulated situations.  It's like my brain is hindered from processing so much stuff all at once.  I go into overload lock down and have to escape...

I see that many here have been helped with sound therapy, with much dedication and patience.  I wonder if it depends on the cause of the hyperacusis as to whether it can be helped that way or not?  I wonder too that while ever I have this tumour there and the effects from RT there could it help me??  I can't afford to spend big money on treatment with the hope it may help.  If I was to try the pink noise CD first would that give me some indication?  These are hard questions so I understand if they can't be answered.

Has anyone heard of or been affected themselves with Radiotherapy or surgery for brain tumours?  Or have hyperacusis from acquired brain injury?  I am extremely interested in the posts, which I have started reading, which talk about the brain stem and central nervous system and toxic substances affecting those areas (ie mercury) as possible causes of hyperacusis as this, in my own mind, parallels with toxic effects of RT.  I have also had surgery (biopsy via craniotomy through the back of my head).  How much damage was done then?? 

Well your coffees are probably finished by this! so will stop here - thank you for 'listening' and I look forward to hearing from you and hope that I can also be a help to someone else with my own story..

kind regards
Lou



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Debbie

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Posts: 1,512
Reply with quote  #2 
Hi Lou,

Your situation sounds challenging, my heart goes out to you and with appreciation for your friendly and positive outlook.

A brief google peek shows plenty of evidence of clinical documentation of hyperacusis with brain stem lesions, seems a bit frustrating that your neuros aren't interested in discussing these links between the brain stem and some sources of hyperacusis in response to your questions.

The auditory processing/overwhelm symptoms you mention are not uncommon on the board, perhaps not as part of hyperacusis itself but as a related condition linked to another central region, possibly also located within the brain stem or other affected area.

While looking at "dystonias" recently, a collection of syndromes thought to originate in the brain stem as well, and while considering how they might relate to hyperacusis and it's frequent coven of additional sets of symptoms, I was interested to note that in some dystonias, the cerebellum is suspected to also be involved.

The cerebellum is the balance center of the brain, and when affected can lead to mild or more significant dis-equalibrium. 
Could your treatment have affected not only the brain stem region but the cerebellum?

I wonder if there are supportive measures you could take, if you are not already, to support your nervous system through these treatments.

A few random ideas to explore...look up any clinical research on

Omega fatty acids
Nutritious diet, free of any neurotoxic chemicals
(which pesticides inherently are)
eliminating and avoiding neurotoxic substances of any voluntary kind such as neurotoxic meds

I might add some form of gentle, hands-on body work, particularly biodynamic form of craniosacral therapy - to help the CNS and body/breath relax and release feelings of trauma
however I realize you are staying close to home.

Hope these ideas are a start, or maybe just nice to reach out and have others on the other line.

Wishing you the best,

Debbie

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Breathing is good.
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LynnMcLaren

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Posts: 7,990
Reply with quote  #3 
Hi Lou, (((( Smiles ))))

Like Debbie I think it's possible too..
I was doing research and found that Chiari which does include pressure on the brain stem as the cerebellum tonsils drop and can also be caused by trauma head injury ect but also can cause hyperacusis too!
Lots of Scholary articles for hyperacusis and Chiari out there.

http://www.chat-hyperacusis.net/post?id=4746429

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Take Care

Lynn
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catlady2323

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Reply with quote  #4 
Hi Lou,

I could relate to several things you mentioned.  I was born with hyperacusis, and other sensory sensitivities (like to florescent lights), but do not have tinnitus nor any pain or fullness inside my ears.  I have lived with this condition my entire life, and I am old enough to remember when the Beatles came to America !  (lol)

You mentioned:  "
Power tools, lawn mowers, road works etc are bad...when I am extra sensitive like now even normal road noise is too much.  Peoples voices if loud or high pitch are bad.  Any loud sudden bangs.  Not only do these cause immediate distress and reaction but long term fatigue and sensitivity."   This is my experience also and always has been for as long as I can remember.  You also mentioned: "I don't function well in highly stimulated areas like shopping centres etc and didn't before the noise sensitivity came into play."  This has also been my experience and since the advent of online shopping, I no longer frequent shopping centres at all.

You asked "
Or have hyperacusis from acquired brain injury? "  I was born with hyperacusis and suspect it was from a combination of genetics and improper brain development.  And the next question you asked I also asked :  "I see that many here have been helped with sound therapy, with much dedication and patience.  I wonder if it depends on the cause of the hyperacusis as to whether it can be helped that way or not?"  It is my opinion, that it does depend on the type of trauma that caused the sound sensitivity.   Since sound therapy is designed for those who have developed hyperacusis due to acoustic trauma to the ears, and is designed to "restore" the damaged pathways in the ear and brain, I decided for myself it would probably not be a treatment protocol that would be useful for me.

The Centre for Nuero Skills says:  "
All information to and from our body passes through the brain stem on the way to or from the brain." The brain stem tumor could certainly be affecting your nervous system, and hence your sensitivity to noise. Have you looked into seeing a different neurologist ?

I limit the noise I am exposed to and enjoy sound enrichment, such as a sound machine when I sleep, with soothing ocean tides or rain, set on a low volume.  I don't hesitate to use ear plugs (-30dB) to dampen down especially irritating or painful noises like power tools, riding lawnmowers, or loud traffic.  I have found that if I don't dampen down these noises, that although they do not cause me any physical pain, that I will become quite fatigued and even go into "meltdown" from the sensory overload.   

Let us know how you proceed with any treatment plans. 

Best regards,

Sharon



 




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Johnloudb

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Posts: 1,951
Reply with quote  #5 
Hi Lou,

Sorry about to hear about your situation. There are things you can do to help the nervous system, like sound enrichment, a pleasant sound you hear all the time. It has helpful to the who sensory system.

I have global brain sensitivity and I also have increased sensitivity to light, sounds, and even many activities like reading and typing. The thing is, the brain is globally linked and everything basically affects everything else.

The doctor who has helped me with this the most is Dr. Hazell (  http://www.tinnitus.org  ). In my experience  the brain gets hurt in different areas for what ever reason, and becomes more reactive to sounds.

I've had sounds hurt my head or cause pain in different areas of my body without it hurting my ears.

There is another pitfall when dealing with these challenges and that's phonophobia (fear of sounds). And, so it's important not to get excited and dwell on your symptoms too much or anticipate the worst.

I also wouldn't overuse ear protection and use it only when sounds are too loud for you. Using ear protection too much will make your symptoms worse as it causes increased sound sensitivity.

Obviously, don't know what too tell you about the brain tumor. But, I would take steps to reduce your sensitivity to sounds, and highly recommend reading everything on this site. (  http://www.tinnitus.org  )

After reading all the information on that site you can also email Dr. Hazell, a specialist in Hyperacusis. He's given me the most help, and he might have some ideas on how to help you with your situation. Or who to look to for help.

Best of Luck,
John

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saab1216

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Reply with quote  #6 
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kimberleydust

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Posts: 91
Reply with quote  #7 
Thanks everyone for your replies.  I will do my best to answer them all...
Yes, Debbie it is frustrating that my Neuro hasn't recognised that the cause of my H is coming from the brainstem (whether it be tumour or RT) when it seems to make such sense after having read whatever info I can on the subject. I
Yes my treatment could well have affected the cerebellum as I had surgery and that's where they went in...also RT went through the cerebellum and the tumour is growing in the area of the floor of the 4th ventricle into the cerebellum.
I am doing several things to support the nervous system which include a natural, whole foods, processed free, sugar free, bad fats free, diet supplemented with concentrated food supplements in the form of green drinks and probiotic foods and drinks.  I also use a transdermal magnesium oil spray and when I am overwhelmed I use bach rescue remedy and essential oils for calming effects. I use omega 3's in the form of Krill Oil and don't take any medical drugs at all - only panadol if a headache becomes unbearable which is pretty rare. 
Unfortunately there is no one close by who does any form of body work...

Sharon I was really interested to read your post as you sound so similar to me.  I was thinking that it might be good to go to another Neurologist but then wonder what they can do anyway to help and I don't want to be subjected to any of those loud noise tests...By what I have read here I would be better off seeing a dr who specialises in hyperacussis and they seem to be few and far between?? 
I like the sound of using nature sounds while sleeping and during the day. 

Thanks John for all you wrote and Dr Hazell's contact info. I will certainly read all I can and am grateful for any info at all.
I am really conscious of not wearing ear protection too much.  I can only wear ear plugs for up to an hour at a time (had to do this recently in an airplane and at a motel was staying at) as they make my ears sore and itchy.  Also the ear muffs cause me head pain after a little while (due to nerve sensitivity from RT).  If I am in a situation where there are other people around and I know there are going to be noises beyond my control I will have one ear plug in and use my finger to regulate the volume in the other ear! This works well! I have to avoid the loud noises that I mentioned in my first post due to the whole effect it has on me (movement trigger) which has its own agenda separate to the noise response...This is the really hard thing for me - it's not just noise sensitivity and it's effects - it is a massive multi factoral situation - some days (as is my experience right now) I just feel like crawling into a hollow log and going to sleep...

It does sound like it may be easier to heal from hyperacusis if it is brought on by damage to the ear itself from loud noise exposure as the parts involved in the ear are able to heal.  It sounds like it gets tricky with situations like mine when it may be caused by a foreign object causing havoc with the nerves involving the auditory pathways.  While ever the object is there so are the symptoms.  However I am working hard at trying to keep my nervous system in a better state to deal with it all.  I am also working hard at trying to get rid of the tumour through dietary means and other natural means (there are no other options open to me here). 

Just to give you a picture of how it is for me at the moment...The last few days my sensitivity has escalated due to recent over exposure and I am having to use ear protection more than normal and everyone around me is being extra careful with making sudden noises.  I have got to the stage where I am needing protection 'just in case' and avoiding going anywhere because the risk is too great.  It's like living on the edge  - it only takes one wrong noise to tip me over.  I feel that at the moment I need to protect myself to this extent and hoping that it will help things to settle down quicker and get back to 'normal' soon.  When no one is around or we are just sitting not doing anything - just quiet talking I can relax and not have any protection on at all. I couldn't think of going to the shops or to someone else's place just now.  As you know when you have to wear protection you can't communicate very well with others so it adds to the isolation...I know from the past and others stories here that it will most likely improve...

Thanks for all your input and glad to have found a group that understands.
Lou



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Johnloudb

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Reply with quote  #8 

Quote:
When no one is around or we are just sitting not doing anything - just quiet talking I can relax and not have any protection on at all.

Yes, It is important to have times to let you nerves calm down and relax. And hurt ears/nerves need sound enrichment, so that might be something you can work on that could helpful. It reduce the intensity of the sounds that cause you problems. How to use sound enrichment is explained on Dr. Hazell's site also. Any sound used for sound enrichment has to be a pleasant sound you have no dislike for that you can listen to all the time. You should also get used to the sound for a period before using it as sound enrichment.

Take Care,

John

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aQuieterBreeze

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Posts: 2,083
Reply with quote  #9 
Hi Sharon,

you mentioned -
 
 Since sound therapy is designed for those who have developed hyperacusis due to acoustic trauma to the ears, and is designed to "restore" the damaged pathways in the ear and brain, I decided for myself it would probably not be a treatment protocol that would be useful for me.
 
Some with hyperacusis who have reported and noticed a lot of improvement, in their tolerances to sound,  developed hyperacusis by other means - other than from acoustic trauma or loud noise exposure.
 
And in my view, and from what I have read - there are many ways to use sound, to help improve ones tolerances to sound.
 
I also think that to believe something is possible can be helpful,
believing something is possible, does not get us down the path -
but it can be very helpful ........
to have hope that things can get better .......
in part because if we believe something is possible, even if it may be difficult - I think we may look for ways for it to happen. 

Long  before i signed up for this board, to see that others were able to improve,  gave me  hope ... It let me know it was possible,  and i never would have wanted to listen to anyone who tried to tell me it was  not.
Though at times I wondered....as I've had some very long lasting and difficult setbacks -----
 But some around here had been through some Extremely difficult times, and were able to get a whole lot better .....

If we start with the attitude  that something is or may be possible, we may search for ways and put forth the effort to help make it possible --
sometimes believing something is possible can help open the door - so we look for the way.
Instead of keeping the door closed, and not noticing the path or paths that would have been visible, if we only looked......

 Also sometimes when we are on a difficult path, it can sometimes help to take smaller steps - and sometimes, continually taking those steps - one step after another, can really add up. And get us where we wish to be in the long run.
 (I actually learned that on a hike in the mountains, someone told  me that taking smaller steps, instead of longer strides  when going uphill could be helpful , the road was steep, and he was right - and  the difference it can make can be amazing .....it was a wonderful  hike too)

And what i learned has stayed with me, and i think taking smaller steps can be helpful not just when hiking uphill - but sometimes with other things as well -
like these challenges......

I think it was Patti who coined a beautiful phrase awhile back - "steps forward"
I really like that, and have had many steps forward when it comes to these challenges, though i still have a long way to go, I am a long way, and much improved - from where i started.
And I am Very grateful to some around here who have helped keep  this path lit with hope and inspiration -----
(and graciously shared their  knowledge and insight as well) 
 as they have helped me, and many others -  though some very difficult times.....

I agree with John that sound enrichment can be very helpful .....and i think it can be helpful in several ways.
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Rob

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Reply with quote  #10 

Lou –

 

Having your situation assessed by a knowledgeable doctor to determine whether you have hyperacusis is very important.  I hope you will take care of it.  I do not know if you have hyperacusis or not, but I can assure you that hyperacusis is a treatable condition whether it is associated with acoustic trauma or not.  I do not recommend you purchase the pink noise CD from the board at this time.  If you think you may have hyperacusis, it is infinitely more important for you to be examined by a doctor who knows how to diagnose and treat the condition.  Good luck.

 

Rob    

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kimberleydust

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Posts: 91
Reply with quote  #11 

Hi Rob,
Yes I am beginning to see that I will have to do this...one tends to go along hoping that things will resolve of themselves in time but I guess after 2 years and life getting more and more challenging, well it just isn't going to go away...
The difficulty of getting to someone for me is distance - have to fly - and the whole sensory challenge (not just the noise).  I have to go to Perth for an MRI in October so will try and find out if there is anyone there who specialises in hyperacusis.  I have made email contact with 2 different Hyperacusis centres here in Australia  - one in Brisbane and the other in Victoria.  If Perth doesn't work out then Brisbane is possible but not till the end of the year - we drive there each year as have family there. 
Meanwhile I have also sent a letter to the Professors from the Hyperacusis centre in London - the one you mentioned John - Dr Hazell.  I am specifically interested in what they may say re the tumour and RT's effects.
I have also just read the following from a study that was done on Hyperacusis and Closed Head/Neck Injury:
"Hyperacusis may well fall into a category more associated with a destructive auto immune response to injury, ie., akin to injury induced arthritis, rather than a separate trauma outcome."... "Hyperacusis may also be related to auto immune disorder and other inflammatory conditions as many of the subjects reported other varieties of auto immune disorders including skin conditions, allergies, and arthritis.."
I find this interesting because there is a history of auto immune conditions on my mother's side of the family and this makes it quite feasible that there could be some sort of response like this going on...
I wonder if others here have auto immune conditions / inflammatory conditions?
All food for thought!

Thanks A Quieter Breeze for what you wrote...I believe too that one must hang on to hope...When I was first dx with the brain tumour the whole attitude and outlook from the drs was doom and gloom - that was three and a half years ago - I'm still alive and kicking well!!  I have sort other avenues outside the medical sphere - these have/are giving me hope and I believe helping it to stay stable.  For 2 years I lived like there was no hope and it kept growing...My journey back to health has been slow and yes one little step at a time...with many steps backwards too...but ultimately each little step has brought me further today than if I had stopped completely and taken none.  Belief and Hope are strong motivators and we must hang on to them no matter what.  These last few days have felt like steps backward and Saturday I just wanted to curl up into a hollow log and go to sleep forever but just being able to come here and share and get some practical advice is like taking a little step forward and I am grateful to everyone who has helped. 

I was wondering, while I am waiting to hear from those I have sent emails to and take steps to see a professional, about getting some nature sound CD's.  Ones of running water probably.  Does anyone have any suggestions - I don't want to spend a lot of money and they not be suitable...also some might have bird sounds that aren't good...Thanks


kind regards

Lou

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kimberleydust

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Posts: 91
Reply with quote  #12 
I have discoverd something today that I can't believe I have missed in all my study...of brainstem tumours and hyperacusis.

"If there is hyperacusis (increased auditory volume in an affected ear), this is due the stapedius muscle in the middle ear being affected. The stapedius muscle functions to dampen ossicle movements, which normally decreases volume. If there is cranial nerve VII nerve damage, this muscle is paralyzed. Because the branch of the seventh cranial nerve that goes to the stapedius muscle begins very proximally, hyperacusis due to seventh cranial nerve lesions indicates a lesion close to the nerve’s origin in the brainstem rather than more peripheral. Nevertheless, it is still a lower motor neuron lesion, because the lesion is not affecting the corticbulbar tract."

And

 

"Cranial nerves VI, VII, and VIII exit the brainstem anteriorly near

the pontomedullary junction. The abducens nerve is susceptible to

injury because it has the longest intracranial course passing between

two layers of dura on the floor of the posterior fossa, to the cavernous

sinus, and innervates the lateral rectus muscle after passing through

the superior orbital fissure. Injury to the abducens nerve results in

horizontal diplopia. Injury to the facial nerve results in ipsilateral facial

weakness and loss of corneal reflex when the lesion is peripheral. In

addition, when seventh nerve injury is proximal or in the cerebellopontine

angle, ipsilateral hyperacusis, absent taste sensation in the

anterior tongue, and disturbed secretion of tears and saliva are present.

Tumors within the pons are often diffuse, infiltrative of white matter,

and effect adjacent cranial nerves and white matter tracts passing

through the brainstem."


The start of the 7th cranial nerve is right in the centre of where my tumour is!!  This is the most likely explanation so far for my noise sensitivity - call it hyperacusis or whatever you like....I don't have the facial problems except for small spasms now and again. 

Just thought some may be interested in this bit of info...


Lou


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catlady2323

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Reply with quote  #13 
Hi aQuieterBreeze,

You said :

Quote:
Originally Posted by aQuieterBreeze
I also think that to believe something is possible can be helpful,
believing something is possible, does not get us down the path -
but it can be very helpful ........
to have hope that things can get better .......
in part because if we believe something is possible, even if it may be difficult - I think we may look for ways for it to happen.


I don't have a problem with believing something is possible, so long as that belief is grounded on a firm foundation of verified scientific merit, otherwise you can become gullible and a snake oil salesman's dream come true.  Hope is only justified when there is supporting evidence for that hope. 

There is an opportunity cost to running down every rabbit trail that appears as "hope for a cure".   Both time and money can quickly be eaten up by those who stand to gain from your desperation, but have no documenting evidence (other than anecdotal stories) of their "proven" cure.  I merely suggest that before becoming too optimistic that it might be wise to do some research.

I have done that research for myself and my particular type of hyperacusis.  I have also taken into account the resources available for me to visit doctors, clinicians, and others who offer treatment protocols for hyperacusis.  At this time I do not think the science in this area is developed enough to expend the limited resources at my disposal, to pursue treatment with the current treatment protocols used for hyperaucis. 

I think sound enrichment is lovely.  A nice way to comfort myself, and provide a living environment that is more enjoyable.  I am however, under no illusion that it will have any effect whatsoever on the hyperacusis . 

I am here to offer a reasoned approach to a unique and little understood neurobiological problem.  There is no "one size fits all" answer for the individuals who peruse this forum board, so those who find what I share useful can use it, and those who don't, can ignore it.  That is the lovely thing about a public forum.  There is something for everyone.

Sharon


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Johnloudb

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Posts: 1,951
Reply with quote  #14 

Quote:
Originally Posted by Sharon
I think sound enrichment is lovely. A nice way to comfort myself, and provide a living environment that is more enjoyable. I am however, under no illusion that it will have any effect whatsoever on the hyperacusis .

Quit using sound enrichment see how well your ears do. No seriously, don't do that because you ears will get worse.

Anyone who has spent an extended time in a quiet library or office and then tried to step out onto a busy street, to find it way too loud, knows that ears need sounds all the time. 

Quote:
Originally Posted by Sharon
Both time and money can quickly be eaten up by those who stand to gain from your desperation, but have no documenting evidence (other than anecdotal stories) of their "proven" cure.

A cure? No. But an effect treatment? I think so. Marilyn posted a study on TRT in the treatment of tinnitus done by the government. Dr. Hazell and Dr. Jastreboff also did a thorough study on TRT in treating hyperacusis, the most comprehesive study that I've seen done on hyperacusis. Not perfect, but very few studies are.

These mechanisms are no mystery. I was amazed when the physical therapist I saw knew how beliefs affected the body. When an activity hurts us we tend to avoid it. But the body needs activity just like the ears need sound. When you do less muscles get weak and your body gets out of condition. 

In treating back problems she said some people just won't do an activity that hurt them before. So, she gets around it by having them do different activities that work the same muscles, to strengthen the back and get mobility back.

Same for tendinitis. People who have overuse injuries need to back off that activity that hurt them for awhile and do therapeutic activities to help strength and flexibility.

Sounds a lot like TRT. In fact I've done TRT to help me deal with both back problems, tendinitis, and even tooth pain and it works.

That's why physical therapists understand this because they are out in the field and got to do what works. 

It's just unfortunate that ENT doctors and neurologists aren't fully trained in neurophysiology, from what I can tell anyway. When I talked to the head of the neurology department at the University of Utah, he said he'd never heard of anything like that, and that no one in the state could help me. 

Well, Dr. Hazell did help me overcome very high sensitvity to just about everything in the whole world. When I started TRT I couldn't even touch my teeth because it hurt. Well, now I can handle dental cleanings and drilling just fine! Anecdotal story it is, but it is true. And no one else could explain my problems or help me. And I didn't overcome these sensitivities without knowing how.

I understand that neurological problems can cause hyperacusis, but that certainly doesn't mean its not treatable. Probably the biggest problem I see, from what people experienced on the board, is they are afraid of sound, and have trouble dealing with their phobic mindset, or just don't fully understand TRT. 

And just because some have neurological problems doesn't mean they don't need help treating their hyperacusis or phonophobia.

Well, just my opinions, based on my personal experiences. But, there is a ton of evidence supporting TRT, if one opens their eyes.

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kimberleydust

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Posts: 91
Reply with quote  #15 
Has anyone tried "Aire Freshener by Peter Hirschberg"?  It is a free software download that he created and has different nature sounds on it - you can schedule different sounds right around the clock for everyday of the week.  I am finding it easy to listen to - the sounds I have chosen - The only drawback is it is on the computer so you can't hear it all around the house.  It's a start for me anyway to test out different sounds and see what are comfortable.   
There is certainly nothing to lose by just playing these sounds in the background...

Lou


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Johnloudb

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Reply with quote  #16 

Hi Lou,

The ear tolerates familiar sounds we hear on regular basis better. So I'd recommend just using one sound that you hear all time for sound enrichment, not a different sound everyday. 

Sound enrichment is meant to be a sound that is just in the background that we don't pay attention to. 

Though,  nothing wrong with trying different sounds or changing sounds you use for sound enrichment now and then. Just, spend some time getting familiar with the sound you plan to use for sound enrichment. When you can easily listen to the sound all the time, with no problems, you can use it as sound enrichment.

Could you put the sounds you mention on an  MP3 player? You might look for nature sounds that you could put on an MP3 player so you could take the sound with you where ever you go.

John

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catlady2323

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Posts: 208
Reply with quote  #17 

Hi Lou,

At the end of your post you said:

Quote:
Originally Posted by kimberleydust
The start of the 7th cranial nerve is right in the centre of where my tumour is!!  This is the most likely explanation so far for my noise sensitivity - call it hyperacusis or whatever you like....I don't have the facial problems except for small spasms now and again. 

Just thought some may be interested in this bit of info...


Lou




I was quite interested to hear this, as I suspected the real culprit for you was that brain stem tumor.

I am glad you went to the trouble to do some more research on the brain stem and on where your particular brain stem tumor is located. When you first mentioned having a tumor on your brain stem, it seemed clear to me that this was the cause of the increased problems with noise that you have experienced.  When a neurologist tells you the tumor is "benign" that just means it is not cancerous and therefore hasn't spread into surrounding areas.  However  it does NOT mean that it will have no effect.  It can make your life quite miserable by causing extreme sensitivity to noise. 

Benign tumors can often be removed.  Have you looked into having this tumor removed ?

Best of  luck!  Please keep us posted on what you find out, and by all means find another neurologist !

Sharon 

P.S.  I downloaded Aire Freshener about a year ago.  I listen to it on my laptop and have thoroughly enjoyed the extensive range of sounds available.  I really like how easy it is to adjust for the type of sound you want, and for the volume you want.


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kimberleydust

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Reply with quote  #18 
Thanks John for the tips - last night I just played "Forest Stream" which is just water running with very very subtle tiny bird sounds - you can hardly hear them - the water is louder.  There are other water sounds too like rain (that's all it is) and bubbles and fountain. 
I am beginning to understand now the importance of avoiding the noises that cause me grief but never having complete silence for very long...our house even though quiet to many households is never actually totally silent as we have a large chest freezer that hums away off and on...
From my readings I see that I am a bit different to many with hyperacusis as I don't get ear pain so don't have that fear of noise hurting or damaging my ears.  My avoidance tactics for 'bad' sounds comes because of the immediate affect it has on my body with the movement issue and the long lasting effect that has...it also makes my (already challenged) eyes and balance worse.  My whole nervous system becomes hypersensitive.  This adds to the picture that my noise sensitivity isn't caused by the ears themselves but further down the line...So you can see why I try and avoid loud, sudden noise and how this makes one self protect no matter what....If you actually saw what happens to me you would understand fully.

The muscles to my eyes are affected due to the tumour causing irritation/pressure/pulling on the abducens nerve which innervates the muscles to the eye - this causes double vision and tracking issues, and light sensitivity
The facial nerve is very closely involved with the abducens nerve in the brainstem (where these nerves begin) right where my tumour is.  This nerve affects the stapedius muscle to the ear which is involved with loud noise.  If this muscle is paralysed or irritated in any way (ie from RT or tumour or inflammation) then noises aren't dampened down...this is what I suspect is happening with me....I am just hoping that the professors and Dr Hazell will reply to my letter and be able to answer this for me. 

If this is the cause then I don't believe sound enrichment will be the complete answer for me but I do believe that listening to pleasant sounds in the background will help with the anxiety side of it all and help calm the nervous system quicker when I have these episodes...I also feel that having pleasant sounds to focus on may help lessen the effects 'bad' sounds have.  If I get greater help out of it than I expect then wow what a bonus!!  It's no effort to have these sounds playing in the background...I am thinking of getting a water feature to have in the living area...I am fine with water sounds...

I had a read of your website John and could see then (also from reading Dr Hazell's) how sound enrichment and TRT has been able to be a big help to you. The cause of your hyperacusis and how TRT works certainly makes sense to me. It also makes sense how it can help with the anxiety aspect of sound sensitivity no matter what the cause of it is.

kind regards
Lou
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kimberleydust

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Reply with quote  #19 
Hi Sharon,
Yes you are quite right about the benign tumour - they actually class mine as malignant because of where it is - the only advantage being that it isn't spreading to other parts of the brain - but where it is, any little growth can have devastating effects as that part of the brain is so full of nerves and nuclei packed in an area no fatter than your thumb - add to that a 2cm tumour! and there is no room for growth except that it then spills into the fourth ventricle where the spinal fluid flows - if it gets big enough here it cuts off that fluid - that's when they have to put a shunt in to act as the drain for it...  So the symptoms that I have are due to the tumour pulling, pressing, squeezing, shearing the nerves and brain tissue.  It  is also an area that very little is known about...I was told by one dr that you can expect anything with a tumour in that area....oh and I love surprises!!!!  Add to that Radiotherapy which burns nerves together and burns nerves to tumours and burns nerves to other brain tissue....is it any wonder I have noise sensitivity!!!! and a hypersensitive nervous system.  Every single nerve that goes from the body to the brain goes through the brainstem and my tumour is right smack bang in the middle of it!!  When I was first dx the Neuro said to me 'You have the best type of tumour in the worst possible place"!! 
So there is no chance of having it removed - if it didn't kill me then it would probably leave me with devasting disabilities or in a state what they call 'locked in syndrome' where you can't move anything but you can hear what is going on - you want to respond but can't talk.  I have even contacted Dr Charlie Teo and he won't operate now either expecially since having RT - that makes it even more dangerous.  I had a biopsy done of it - they could only get a tiny piece and that was only because it was growing out of the brainstem into the ventricle.  That surgery was just as big as having a tumour removed and I was lucky to pull out of it....

Yes I like Aire Freshener...really good if you want to sample different sounds and see what you like or don't like without having to spend big money...the water sounds are pretty much all I like at the moment! Can't even cope with the waves crashing!!

Hugs
Lou
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Johnloudb

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Reply with quote  #20 

Hi Lou,

I feel for you, I don't know what you can accomplish. But being the supreme optimist I like to think you can improve your situation.

No one really knows exactly what the brain tumor has done to you. I think it's great you're doing research and looking at all the possibilities. But, just looking at your symptoms won't tell you if it's permanent or not.

I also felt really damaged and though I was finished before I started TRT. Sounds caused me migraine headaches, siezures, facial numbness, pin pricks in my face and ears, eczema, neuropathy. I've also heard all the electrical sounds in my head (sounds like music). Could hear the muscle movements in my eyes (electrical), and other body movements. My body temperature actually changed sometimes. And sounds often caused me problems without hurting my ears.

I just know that completely retreating from more and more sounds that bother you, causes increased gain in all sensory systems and only makes things worse in the end. 

You might be surprised what you can handle once you start trying to rebuild your tolerances. Or your tolerances may not improve much, but I'm just saying it's in your best interests to try. TRT doesn't have to hurt. Just take things slow especially at first.

I hope Dr. Hazell does reply, but he gets lots of email and may have missed it. Or sometimes if he thinks people haven't read the material on his site he won't reply. 

So you might try again if he doesn't respond in a few days.

Best,

John



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jc

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Reply with quote  #21 
hi Lou -
I found the part you wrote about auto immune disease very interesting.  In my case, i was taking a drug called Neurontin for pain from a dislocated tailbone and after a few doses, it kicked off an inflammatory autoimmune disease.  Some of my the issues it gave me were hyperacusis, tinnitus, TMJ, eye pain very similar to what you mentioned ( irritation/pressure/pulling  double vision and tracking issues, and light sensitivity), headaches joint pain and neuropathy.  These issues progressed after i stopped taking the medication which is why my doctors think i have an autoimmune disease, rather than that i'm simply suffering from medications side affects

Certainly, we have different cases, but the things that have helped me were 1) sound enrichment - i just have an air filter that i keep on all the time that emits a white noise type sound 2) steroids and 3) A mouth guard called the NTI night guard.  The night guard has helped my hyperacusis so much.  I'm wondering if wearing some type of mouth guard would allow some of your facial muscles to relax at night and give you some type of relief.  It might help with the spasm you mentioned - it's helped with a spasm i had in a muscle near my left ear.  Also, do you have any signs of TMJ or mouth clenching
 

best regards,
Jenny

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kimberleydust

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Reply with quote  #22 
Hi Jenny - that is really interesting - I was taking Neurontin (GabaPentin) for a few months for nerve pain back around the same time as having Radiotherapy. I was also on Dexamethasone at that time (only for 6 weeks though and very small dose).  Can all add up to toxicity...  Something I need to ask the Professors...

The spasm I mentioned is around my mouth and probably more like a pulling sensation and I've only had it a few times - it's not painful...I don't have any signs of mouth clenching and my husband has never heard me grinding my teeth...I do however have TMJ tightness - occasionally get aching in jaw and cheekbones whcih can be pretty painful - had braces as a teenager due to misalignment with my bite - apparantly this can throw your whole jaw out of whack...I have a friend who is a bowen therapist so will talk to her about it when I see her again...she has worked on my TMJ before...

Lou


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catlady2323

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Reply with quote  #23 
Awww ((Lou))

You really have your plate full !   You have such an optimistic attitude, and charming personality.  Sounds like you are stuck with this tumor for the time being, which is too bad.  Please keep us posted as to what helps you, and what doesn't seem to make any difference.  You do have a very unique situation which may not have any simple answers and may just be something you find you have to work around. 

Best of luck as you try different treatments and coping strategies,

Hugs,

Sharon

P.S.  I do love the different sounds on Aire Freshener.  I also have a unique situation as my brain is unable to filter out noises so I can do other things, like write this note to you!  So for me, I only listen for short periods of time since it frustrates me to try and think with all that dang noise !   lol    No matter how long I listen, my brain will NOT filter out background noise. Be sure and let us know what works for you. 

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kimberleydust

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Reply with quote  #24 
Hi Sharon,
I love the water  sounds of AF and at the moment have the Fountain playing - I am going to look for a table top water feature today - braving the shops - first time since last week...

I am taking measures to try and get rid of the tumour through natural therapies and so hopefully one day it will get the message and leave!!
Yes it does seem to be a matter of adapting around it for now and at the same time continuing what I am doing and adopting these new ways to make things a bit more liveable...I try to stay positive but have many moments of down time but you have to keep getting back up...it's called survival!! Someone told me once that I am a survivor so can't let them down!!

Hugs
Lou



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aQuieterBreeze

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Reply with quote  #25 
Hi Sharon -

In response to my reply to you -
you mentioned -

I don't have a problem with believing something is possible, so long as that belief is grounded on a firm foundation of verified scientific merit,

Where would we be without science and innovation, and inventive and inquisitive minds? People who thought something may be possible. (From what i understand, people used to accept it as fact, that the world we all live on - was flat)
How did we ever wind up with computers or cell phones - or the Hubble space telescope?
People who thought something may be possible .......
it has to be a possibility before it is proven, and an idea in someone's mind first -
perhaps a spark of an idea that as someone thinks about it becomes a possibility.....

Einstein said - "Imagination is more important than knowledge" -
maybe that is because imagination can lead to ideas and possibilities and different ways of thinking -
than being bound by the knowledge that is currently available -
knowledge is written in books -
imagination may be the creative spark for new ideas that become the knowledge, that is written in the books of tomorrow.
I wonder if that is because imagination leads to new knowledge -
and thought processes that can lead to ideas that can create new knowledge and possibilities -
and imagination can take ideas that are helpful for one situation and see if they may work otherwise.

You comment led me to think of that quote by Einstein - it's one I have always liked and graces an old bookmark I've had for years (the kind of bookmark that is used to mark pages in a book)
after writing the above paragraphs, I looked  up that quote  -

Here's the rest of it - 

“Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand.”  Albert Einstein

you mentioned -

you can become gullible and a snake oil salesman's dream come true. 

It does not Have to be that way. Though some are gullible .....
But you are talking about being gullible, and that is different than having hope.


and you also mentioned -

Hope is only justified when there is supporting evidence for that hope. 

How about hope mixed with faith that almost anything is possible. Faith that if one sets their mind to something there is very little they can not do?
Hope can sometimes create, or help light  it's own spark of creativity ....lighting the corners of one's mind.. among other things sometimes allowing us to view things from a different perspective .....it does not have to rely on previously proven facts to do that.
maybe that is part of what what makes it hope -

I found your statement above sad, hard to look at,  and upsetting in certain ways -
Perhaps because you present what you say as fact and you sound so sure of yourself. 
Though thankfully,  it is not what I believe or find to be true.
That is not the way i would would wish to live or look at the world,
and what if the evidence is there but one has not come across it yet .......
There are some things we can not change, no matter how much we would like to -
but other things we can, and even with things we can not change - sometimes changing the way we think about them can be very helpful.

And sometimes changing the way we think about something can lead us to solutions or possibilities  we never thought possible, and never would have dreamed of, or imagined otherwise.

Many times when people think things are not possible, they tend to prove themselves right -
And the same is true, ( in many cases) when someone may think something is possible.....

To view ones situation (even if it's one we can not change) as something we can do something about,
in some ways -- can be helpful.

It's not unusual for very stressful reactions to sound to occur when people have had so much difficulty with these challenges.
And improving ones tolerances to sound can be very helpful.....

Though if one is absolutely sure there is nothing they can do, to improve their tolerances to sound .....
they may prove themselves right .....
but if one thinks there may be something they can do ..........it's possible - they may also prove themselves right.

Improving ones tolerances to sound  does not necessarily need to, or always involve,  the wearable sound generators -
And not everyone who has reported alot of improvement -  has been through TRT - though some have.....

And the way we think about things, can sometimes make a lot of difference.
And that is extremely true when it comes to improving our tolerances to sound.
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Cheesecake

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Reply with quote  #26 
I think it's always good to have concrete scientific evidence, but I also think its beneficial to have faith in modern day medicine and research. I'm kinda annoyed at the moment because just seen our coalition government in UK have pulled out millions of pounds in funding for research.. I think America are more likely to find something worthwhile though to be honest..

Lou I found your comment on jaw alignment quite interesting:
I do however have TMJ tightness - occasionally get aching in jaw and cheekbones whcih can be pretty painful - had braces as a teenager due to misalignment with my bite - apparantly this can throw your whole jaw out of whack...

I too had a brace for jaw alignment and I feel it messed my jaw up! I now have to wear a night guard on my bottom teeth because I grind them also my jaw is very clicky. Since I've been having my recent problems my jaw has been a whole lot worse, after eating my meal last night my jaw felt very tired and achey. I've had acupuncture in my jaw before now I only had it done once I felt it made it worse but maybe if I had it regularly it could help somewhat.

Cheesecake 

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aQuieterBreeze

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Reply with quote  #27 
My comments to Sharon (in my post above)
are mainly because I think some can become so entrenched in their thinking, or ways of thinking -that it seems like it is concrete.
But it does not have to be that way, and I think hope can help make that difference ....
(to be open to  new and/or different  ways of thinking can be important - and that is especially true when it comes to these hearing challenges )
I think it can help open the door (or doorways in our minds) and/or leave us open to ideas and solutions  or possibilities we may never have noticed otherwise.

I think if someone is so set in their thoughts, that they discard the idea of  being able to improve from hyperacusis and/or it's related challenges,  because they have not seen the (according to their way of thinking, or specifications)  properly documented evidence or studies  that it can be done - they may not notice ways to improve or inspiration when it shows up.
Telling ourselves we can not do something, can be like a roadblock. (And that can be true with many things.)
Sometimes it is not a matter of that we Can Not do something (that something is impossible) - it can be a matter of  will not - that we actually do not wish to do something, or try to do something
(or that we choose not to do something ) for whatever reason - and that's ok (at least in some cases or with many things) - but it can be important to notice that difference.
Some things are very possible if we try ... and impossible, or extremely  unlikely, if we don't.
(Though we may never know until we do try)
I think improving from these hearing challenges (improving ones tolerances to sound, and being able to have tinnitus be less of an issue in our lives) can be like that ..though many will not even try.

My comments were not about the medical system in general, or medical research,
though it is true those books and others -  only contain what has already been written, so far.

And knowledge (that is written in books or proven by testing theories) keeps evolving as we learn more and more about the world around us
And People with imaginative and inquisitive minds will write new books  and  discover new solutions and ways of thinking and come up with and present ideas -  that will probably blow the lid off of some theories that some accepted as fact or assumed to be true  (about many things - in life and the world around us ) for a long time. 

I agree with Sharon that it's not good to become hoodwinked by snake oil salesmen,
(and i am sure they would have a field day with people wit T&H if they could!)
And that to have "concrete" evidence that something works is wodnderful - and to have evidence that other things do not,  is very helpful as well --- (Though I am sure the snake oil salesmen would disagree)
but to accept it as fact that one cannot improve from these challenges, just because the proven evidence one is looking for or looking at - seems to be lacking......would seem to me to leave one's mind closed to other ways of thinking, or looking at something ......
and sometimes they way we think about things, can make a lot of difference.

Just my thoughts though--
And at one time, i really thought i would never be able  to listen to any rock and roll music ever again .....
so my thinking keeps changing too - and with these challenges I think  it's important for that to be able to happen....

I also thought at one time, that like classic rock,  I would  never be able to ttolerate the sound of any thunder ever again - without muffs
(though before getting these challenges - I used to enjoy watching storms)
and to  have even a distant lawnmower - be part of the background sound at times....would have seemed impossible, something i never thought would happen........
and imagine my suprise when i noticed that at one point last summer ......

Though I still have a long way to go, but am far  from where i started......
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catlady2323

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Reply with quote  #28 
Hello,

In regards to following "hopeful" ideas.  Hope is only useful if it is balanced with a good dose of skepticism and inquiry.  Ever wonder why cake recipes have salt in them?  All that sugar needs a touch of salt for balance. 

British Petroleum was very "hopeful" that it could drill for oil safely.  So hopeful in fact, it had useless contingency plans in the event of an oil leak.  We have witnessed the enormous harm such thinking has caused the Gulf Coast residents and wildlife.

The overriding principle in medicine is "first do no harm."  To be in a position to "do no harm" one must understand that wishful thinking, hopeful ideas, and imagination, must all be backed up with tedious, step by step, science based work.  Einstein also said:
 
"Two things are infinite: the universe and human stupidity; and I'm not sure about the universe."

 To avoid human stupidity, best to do a bit of thinking and research before following hopeful ideas.

Sharon





 
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Rob

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Reply with quote  #29 
Sharon -

What sorts of things have you done to help your challenges with sound?  You've probably covered this before, but I may have missed it.  What sorts of things do you do now?
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Johnloudb

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Reply with quote  #30 

Quote:
In regards to following "hopeful" ideas. Hope is only useful if it is balanced with a good dose of skepticism and inquiry.

TRT isn't a hopeful idea ... it's a treatment that works. That's why they do it.

Quote:
The overriding principle in medicine is "first do no harm."  

Yet there is a boat load of ENT's doing lots of harm, telling there patients tinnitus and hyperacusis are permanent and a result of permanent ear damage. Not true.

Or neurologists dismissing peoples symptoms and tell them to get psych help.

Silence does lots harm.

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kimberleydust

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Reply with quote  #31 
In light of the thoughts on hope I thought this might be helpful...an abstract from Medline on a study that was done...

Are results of tinnitus retraining therapy maintained over time? 18-month follow-up after completion of therapy.

Forti S, Costanzo S, Crocetti A, Pignataro L, Del Bo L, Ambrosetti U.

Audiology Unit, Fondazione IRCCS Ospedale Maggiore Policlinico, Mangiagalli e Regina Elena, Milan, Italy.

Abstract

Tinnitus retraining therapy (TRT) is a useful treatment for tinnitus. The aim of this study was to evaluate the results obtained after 18 months of TRT as well as 18 months after completion of therapy, i.e. 36 months after initiation of TRT. Forty-five subjects suffering from an idiopathic tinnitus with or without hyperacusis for at least 6 months were recruited. There were significant improvements during therapy (p < 0.001) and the mean Tinnitus Handicap Inventory (THI) was lowered by more than 20 points. These improvements persisted 18 months after treatment completion. Furthermore, the percentage of patients reporting the disappearance of their difficulties in various activities (relaxation, concentration, sleep, social relations and work) increased continuously after treatment completion. TRT improved self-perceived disability induced by chronic tinnitus for a long time after the end of therapy. Copyright (C) 2009 S. Karger AG, Basel.

PMID: 19372645 [PubMed - indexed for MEDLINE

 

 

Lou

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kimberleydust

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Reply with quote  #32 
I thought this was interesting too and has given me hope that maybe it is possible to get results by just doing the sound enrichment...

[Open-field treatment of hyperacusis]

[Article in Spanish]

Moliner Peiro F, López González MA, Alfaro García J, Leache Pueyo J, Esteban Ortega F.

Unidad de Otorrinolaringología, Hospital de Día Quirón, Zaragoza, España. fmoliner@able.es

Abstract

OBJECTIVE: Prospective study of the effectiveness of treatment in patients with hyperacusis by means of an open-field technique of acoustic treatment with nature sounds. MATERIAL AND METHODS: 34 patients were referred to a tinnitus and hyperacusis clinic at a private Otorhinolaryngology Department. Clinical and exploratory ENT studies were performed. Open-field nature sounds were applied by means of a compact disk for half an hour each day during a period of several weeks. RESULTS: By the end of treatment, the 34 patients studied had reached normal discomfort thresholds in a maximum of 9 weeks. CONCLUSIONS: The progressive open-field application of nature sounds has been effective in eliminating hyperacusis in a short space of time.

PMID: 19268128 [PubMed - indexed for MEDLINE]Free Article

 

 

Lou

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catlady2323

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Reply with quote  #33 
Thanks Lou for posting that study's abstract.  Very interesting reading. Please post more studies as you come across them in your reading.  Here is an additional study done in 2008.

Pros and cons of tinnitus retraining therapy.

Hatanaka A, Ariizumi Y, Kitamura K.

Department of Otolaryngology, Tokyo Medical and Dental University, Tokyo, Japan.

Abstract

CONCLUSIONS: A significant reduction in the Tinnitus Handicap Inventory (THI) was obtained as early as 1 month after implementation of tinnitus retraining therapy (TRT). Over half of our patients either could not tolerate the tinnitus control instrument (TCI) or obtained a poor result in the TRT trial. Candidates for TRT should thus be restricted to patients who can use the TCI. OBJECTIVES: TRT has been regarded as a promising therapy for tinnitus, although there have been very few studies to determine which patients are most likely to benefit from TRT. The aim of the present study was to demonstrate TRT's pros and cons based on our experience. SUBJECTS AND METHODS: The subjects were 217 patients with intractable tinnitus. Of those, 84 tolerated TRT and 79 were followed for 6 months. The remaining subjects did not undergo TRT. Japanese translations of the THI and visual analogue scale of annoyance caused by tinnitus (VAS) were administered to evaluate the effect of TRT. RESULTS: The average THI score at the beginning of the treatment was 48.8, but it was 36.3 (p<0.01) 1 month after starting the treatment and 28.3 (p<0.005) after 6 months.

PMID: 18368566 [PubMed - indexed for MEDLINE]

TCI:  "Tinnitus control instruments" (TCI) is the name given to the small instruments which are similar to hearing aids and are worn inconspicuously behind the ear or in the ear. They generate a quiet, therapeutic sound..." 

This study is just of tinnitus and does not mention hyperacusis.  The success rate of the 84 who could tolerate the Tinnitus Retraining Therapy, and of the 79 who were followed for 6 months, showed an improvement of about 42% in their tinnitus symptoms after 6 months.

I think this represents a more realistic assessment of what TRT can hope to accomplish for those with tinnitus.  This is significantly lower than the 80 - 85% success rate touted by those who run tinnitus and hyperacusis clinics that specialize in TRT. 

I find it interesting that over 1/2 of the patients could NOT tolerate the wearable sound generators, or obtained a poor result from the TRT.   That is a large percentage, in my opinion.  Since TRT is not currently covered by the majority of health insurance companies, and the out of pocket expense for this form of treatment is $2000 to $3000 dollars at my last estimate, I think this makes it an expensive gamble.

The well known Oregon Tinnitus and Hyperacusis Treatment Clinic, lists Blue Cross Blue Shield (BCBS) as one of the  "INSURANCE Programs we participate in as of Nov. 2004:"  Upon further investigation however I have not been able to find any BCBS provider that will cover TRT.  BCBS of Kansas City says "BCBSKC will not provide coverage for the treatment of tinnitus. This is considered investigational" .  BCBS of Michigan and North Carolina say "BCBSNC will not provide coverage for treatment of tinnitus with... tinnitus-retraining therapy, .... These treatment methods are considered investigational.
BCBSNC does not cover investigational services. (Bold added)

Priority health in their current review says:   " Most of the published scientific literature related to TRT consists of explanations of the neurophysiologic model on which this therapy is based. Although there are reports of a nearly 80% success rate with this treatment, these reports are based solely on patient surveys from a select group of patients who received TRT at one of two treatment centers. There are no published randomized clinical trials
comparing TRT to existing, albeit unsatisfactory treatment options, nor are comparisons made to sham treatment. Jastreboff and colleagues report improved
outcomes with TRT compared to counseling alone for patients treated in their clinic; however, this data was based on post-treatment patient surveys, and these patients were not treated under a formal research protocol. Treatment choices were based, not on randomization, but on patient preference or financial ability to pay for TRT, thus introducing selection bias into the reported results. Based on the lack of controlled studies comparing TRT to existing or sham treatment, conclusions cannot be drawn concerning the health outcome effects of tinnitus retraining therapy. Randomized, controlled clinical studies that include no-treatment and placebo groups are needed to ascertain the effectiveness of TRT in the management of patients with tinnitus.
II. POLICY/CRITERIA
Tinnitus retraining therapy for the treatment of tinnitus has not been shown to be effective in peer reviewed medical literature. This approach is considered investigational and unproven and is not a covered benefit."  (italics and bold added)


My research has led me to conclude that for me, TRT is not a viable treatment option.  The expense combined with the low verifiable rates of improvement, make it not an appropriate gamble for me to take at this time.  I also strongly suspect I would be unable to tolerate the wearable sound generators (as apparently almost 1/2 of those in the study cited above were unable to do.) 

I continue to use sound enrichment in the form of music, a nighttime sound machine, and nature sounds, but I have no illusions that this will significantly increase my tolerance for noise. 

Sharon

P.S.  I have found the best thing for enabling me to tolerate higher levels of noise is no caffeine,  a good nights sleep, and the calcium/magnesium vitamin D  supplement I take daily.


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Johnloudb

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Reply with quote  #34 
There's always critics. Many people here have had good success with TRT. It's not just ear devices, you know that. 
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kimberleydust

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Reply with quote  #35 
Heres another study done on TRT - talks about night time TRT...Even Category 4 has 75% success - it is the hardest to treat - I believe I am in this category - Hyperacusis made more severe by noise.




[TRT: results after one year treatment]

Madeira G, Montmirail Ch, Decat M, Gersdorff M.

Veranneman, Auxiliaire Acoustique, Galerie Ravenstein 35-37, 1000 Bruxelles, Belgique.

Abstract

INTRODUCTION: Tinnitus Retraining Therapy (TRT) (which aims to induce changes in the mechanisms responsible for transferring signals from the auditory system to the limbic and autonomic systems) is a method for treating Tinnitus and decreased sound tolerance. An individualised explanation of Jastreboff's neurophysiological model allows greater insight and motivation on the part of the patient. Previous studies have demonstrated that daytime TRT is effective. As sleep forms a significant component of the distress associated with Tinnitus however, we hypothesised that night-time TRT could represent a useful tool in the treatment of this disabling condition. MATERIAL AND METHODS: 46 patients were studied (30 male, 16 female). Patients were selected from an ENT outpatient clinic. Patients with significant psychological disability were excluded. Patients were reviewed twice by their doctor and 5 times by a therapist over 12 months. Treatment consisted of 8 hours nighttime white noise stimulation, at progressively increasing intensity. Although several objective assessments of response were undertaken, patients' subjective testimonies were considered a more accurate signal of success. RESULTS: In total, 80% of patients had a satisfactory response after 1 year of treatment. 20% had no response. Patients were subcategorised according to Jastreboff's categories as follows: 1. Tinnitus (n = 6), 100% improved; 2. Tinnitus with hearing loss (n = 16); 62% improved; 3. Hyperacusis (with or without Tinnitus) (n = 16), 88.5% improved; 4. Hyperacusis (with or without Tinnitus, exacerbated by noise) (n = 8), 75% improved. CONCLUSION: Tinnitus is a symptom rather than an illness, and TRT gives patients greater control, allowing re-integration of normal perception. Night-time TRT is an effective treatment for Tinnitus and decreased sound tolerance. It has the potential advantage over day-time TRT of rapidly improving sleep and decreasing use of sedative hypnotics, a secondary effect noted in the personal testimonies of our cohort of patients. Further studies are needed to confirm this advantage, in view of the significant risks associated with long-term use of benzodiazepines. When investigating therapies for Tinnitus, it is necessary to measure success in terms of quality of life, as it is to this that the patient attaches the most importance.

PMID: 18323325 [PubMed - indexed for MEDLINE]

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catlady2323

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Reply with quote  #36 
Hi Lou,

Thanks for posting this study abstract.  This might explain why I have had such good success with my night time sound machine.  I have it set on either ocean tides or rain, and have it loud enough that I can focus on it as I fall asleep, letting it "lull" me to sleep. 

I also fall into that catergory mentioned of those who have hyperacusis ( but no tinnitus), that is exacerbated by noise, which saw a 75% success rate.  

It makes sense that night time treatment for tinnitus would be a good plan.  I myself don't have tinnitus, but can imagine it would make sleep very difficult during the quiet hours of the night. 

Thanks again for posting the abstracts of the studies you find.  Makes for very interesting reading.

Sharon

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aQuieterBreeze

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Reply with quote  #37 
Sharon,

It's wonderful  you have some sounds that you find pleasing and helpful to fall asleep to,
and use for sound enrichment at night -
you mentioned -

This might explain why I have had such good success with my night time sound machine.  I have it set on either ocean tides or rain, and have it loud enough that I can focus on it as I fall asleep, letting it "lull" me to sleep. 

Would you be willing to tell us what you are  using for a sound machine?
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catlady2323

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Reply with quote  #38 
Hi aQuieterBreeze,

I would be happy to share what I use for a sound machine.

I bought a sound machine long before I had an official diagnosis of hyperacusis (which is when I found out my LDL's ranged from 30dB to 50dB).

I have also used a tabletop fountain for many years, long before I was aware of  "sound enrichment" as being part of the treatment protocol for sensitivities to noise.

The sound machine I am using is a Phillips, which offers six sounds:  soft sound, rain, outdoors (crickets mostly), heartbeat, brook, and ocean.  It can be used either with an adapter to plug into an electrical outlet, or with 4 AA batteries.  I have used it for many years every night to "lull" me to sleep.

Sharon
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aQuieterBreeze

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Reply with quote  #39 
Hi Sharon,

Thanks for your reply.
It took me a long time to realize that  sound enrichment (and using sound in ways that i have since found to be helpful)  - could be helpful for these challenges,
Everything in the way of  sound was so difficult on my hearing/ears (except some very gentle sounds of nature) for a Long time.  When i was finally able to turn the car radio on, it stayed on NPR for years.
To discover that some around here were using other ways to try to improve their tolerances to sound - other than the wearable sound generators used in TRT was a real eye opener for me ...
and it helped open my mind.......
And the first time i put a CD with some nature sounds on my stereo, playing at very low volume - and playing gently over the external speakers ....
I sat down in another room - looking out my window,  it was wintertime and as I sat there drinking my coffee-   I felt my mind relax, for the first time - in a long time.  It was wonderful.
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kimberleydust

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Reply with quote  #40 
Hi All - Wrote this a few days ago and forgot to post...
 
I've been using water sounds all night - simple continual water running.  Last night I had to turn it off as couldn't cope with it...but have it running again today...I am finding that the sounds I can cope with also vary depending on many other factors. 

I don't know if anyone else has this or not but I don't cope with too many DIFFERENT sounds going at the one time.  (All part of the problem with processing too much stuff at any one time)  Like now I am listening to the water running sounds, the washing machine going, my fingers tapping on the keyboard and various other sounds coming and going outside...this is almost too much and I really feel like turning off the running water but if I do it makes the other sounds louder....soon the freezer will start up....What do you do in this situation apart from plug up completely which I am really trying to avoid doing - I try to keep the plugs and muffs for when I really need to use them....Ok, the freezer has started up so I have had to turn off the water....

There are situations where noise can be just annoying and a little hard to put up with (like now) but others where the noise is very detrimental and NEEDS to be shut out.  These really varies very much from person to person and even situation to situation...Even different times of the day this changes.  When I first woke up this morning when it was all really quiet I was assaulted by the reversing beep of a road works truck - it goes on all day every day at the moment due to house building across the highway from us.  I have to spend my time in a different part of the house to get away from it - can still hear it but it is tolerable being drowned a bit by other noises.  Ultimately only we ourselves know what we need to do to cope...At that time of the morning I couldn't go outside without my muffs on (Level 4 so they don't totallyblock out but muffle to more tolerable) but later in the morning I could go out for a short period to hang some clothes out, without any protection...At the moment I won't take risks where problem noises could be because of being so vulnerable but in say a weeks time I will very gradually start to introduce some of these noises again as I feel I can cope successfully with them without setback....I now know volume and length of time exposed has a big bearing on how this will affect me longer term. 

We have to balance it all out with our mental and emotional well being seeing as it is all so closely related.  I am convinced with my own situation that it began as a totally physical problem, which isn't going to go away in a hurry, and it is setbacks, like now, which causes anxiety and emotions to then exacerbate the condition...like these do with any illness...and who wouldn't have anxiety and stress with tinnitus and hyperacusis??!!  I feel I have now got these under control and have accepted what I need to do to move forward...

I can look back now and be thankful for the experience which has taught me what NOT to do, in the future!! and if for unforseen reasons or situations beyond my control, I know what to do to get 'back on top' (I'm just talking about back to what my 'normal' was before the setback).  Then keep working at improving that 'normal' level...

One day at a time....sometimes One moment at a time....

PATIENCE, PERSISTANCE, PERSERVERANCE!!

 

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LynnMcLaren

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Reply with quote  #41 
Hi Lou, (((( Smiles ))))

Been going through some posts and read what you posted up there..
I've been researching on the subject of mercurys effects on the brain, central nervous system, auditory system etc for awhile now and found alot of interesting things on that subject..
I posted alot of it in the thread Heavy Metals and Ear Disease and in the thread Pink Disease.
I got interested in that subject because of my expirence with H and T and my expirence with my children that have autism and their auditory difficulties that I wrote about long ago.
And something someone wrote " Leah " long ago on the board in a flu thread and  I just had to check out what she wrote for myself and then been researching on this and that every since.
Plus in reading other people's stories with their auditory sensitivites, sensory, visual  ect..
And plus liveing in a toxic world that we live in theses days and now recently it was in my local newspaper that all fish are contaminated with mercury now besides the mercury in water or in the air we breath.
Any source of mercury can be a big problem when it comes to neurological issues and auditory issues and you've probably been reading up alot on that kind of subject yourself as you seem interested in that subject too..
But in one type of exposure to mercury and of course there are many types ways of probably exposure...
They mention becoming sensitive to noise as a factor in this link below..
And also that can happen in autism to and in other disorders and it just makes you wonder?? 
Things that are known to effect the auditory system the brain and can cause neurological symptoms to come about.
I read the statistics they did on another page on that board  and sensitivity to noise/ sound is common for them..  http://www.pinkdisease.org/

Plus abnormality sound sensitivities too, as I found another link on that on a medical university site which I posted somewhere else on this board long ago.
It's food for thought in this day and age.. ((((( Smiles )))))         

Quote:

I am extremely interested in the posts, which I have started reading, which talk about the brain stem and central nervous system and toxic substances affecting those areas (ie mercury) as possible causes of hyperacusis as this, in my own mind, parallels with toxic effects of RT. 


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Take Care

Lynn
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