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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #1 

Author: Marie 
Date:   03-03-03 16:31


Hi everyone!

This question may sound a bit off the wall.....but here it goes.

Iv'e noticed that if I go to the beach and it's kinda windy. Or just on windy days, my ears hurt at times. And the wind also irritates my tinnitus. I will come home and my ears will roar like a low pitch sound.

Have any of you noticed this? Or have experienced this at all?

I had read that people who ride motorcycles and don't wear ear protection that the wind can cause damage to their ears. Many have lost some hearing from that too!

Aloha
Marie

 

 

 

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Author: paul 
Date:   03-03-03 16:37

ill never forget the day i went to the ENT and he told me that i could never drive with my window open because the wind noise is a dangerous level. your not the only one Marie

 

 

 

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Author: Sandy T.H. 
Date:   03-03-03 16:54

The wind bothers my ears. Also, does the roar of the ocean bother your ears? When I walk on the beach I wear plugs. If I don't wear plugs my t. is elevated from the ocean roar.

 

 

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Author: Marie 
Date:   03-03-03 20:44



Hi Sandy,

No the ocean doesn't bother my ears, it's just the wind if it's really windy,
or strong.

Cause the wind is hitting inside the ears (you know)?

I have a friend that even though she has no tinnitus or hyperacusis......if she goes for like a hike up in the mountains and it's windy, she says she has a terrific ear ache.

So just imagine what it does to people like us? Yikes!

Thanks for responding.

And thanks Paul for responding also!

Aloha
Marie

 

 

 

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Author: Sean 
Date:   03-03-03 22:46

I havn't noticed specific after effects of wind noise, but it makes my ears hurt also (I didn't have noise problems prior to my H). I've tried earplugs in the wind also but sometimes the plugs themseves make a wind noise at a higher pitch so I have to decide which noise I'd rather hear that day.

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Author: Dale
Date:   03-04-03 13:39

Hi All,
I have a really difficult time with the wind. It usually makes my ears have a low loud hum that can make for a rough ear day for me. I never thought of the wind as being high pitched, but rain is and therefore I have a real problem with rain too. Last time I was at the beach I remember the waves being very loud and making my t louder.
Have a good day
Dale

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #2 

Author: Shirley
Date:   08-06-04 13:28

Last year I begin to experience ear ache in my left ear.Ihave seek professional help from a ear ,nose, and throat specalist.Iwas told that it was my allergies,but that not the case.The problem is whenever i,am exposed to any type of wind ,my ear hurt terribely. Is there a treatement
that is available that you can recommend.

Thank You,

 

 

 

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Author: Marie 
Date:   08-08-04 02:11



Hi ,

The only advise I can give you is that when its too windy for me ...I put in my earplugs. It has saved me great pain. Cause wind at times can give me a ear ache.


Aloha
Marie

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Author: Kate M. 
Date:   08-16-04 19:55

Hi, I was just at the beach. It was very windy and the surf was up. Right after I left my T was up. This has happened many times. I finally started wearing my earplugs and it seems to help a lot. Kate M.

 

 

 

 

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Author: Maria
Date:   08-06-04 11:57

Hi all, I'm hoping someone can give me some advice. It is a somewhat desperate situation with respect to ... "everything". I am going to post a copy of a letter I wrote that, last week, was sent to: John Volpe, Minister of Human Resources Development Canada, The Office for Disability Issues, Gov't of Canada, Claudette Bradshaw, Min of Labour, Gov't of Canada, Lynn Grears, Program Co-ordinator, Self-Employment Program, Vancouver, BC., and my creditors/balance protection insurance (which I pray I get approved), and Equifax (I imagine over the last week my credit rating has gone from perfect to an R9). I also sent it to my local MP yesterday and the Human Rights Commision who have already told me I have no claim because I was not in a disabled program.

Although I would not expect to hear back from those I sent to yesterday, I have not heard back from anyone else either.

I've worked in different ministries as well as had to deal with issues for patients while working contracts in healthcare and I know I am not unique in this treatment. I "want" to fight this.

Thanks :-)

Maria.


Letter Begins
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My last position (Research Assistant/Contract) came to an end in March, 2003. I applied for EI benefits. I was concerned about being able to work �anywhere and everywhere� as I had been working from home over the most recent employment consequent to a hearing sensitivity I found out was, in fact, hyperacusis.

On the day I applied for EI benefits, I saw posters for the Self-Employment Assistance Program which was �perfect� for me. I applied, and was accepted, into the program (see attached letter as reference).

I began the program on July 6, 2003. Over the next few months, I noted short-term memory loss and other symptoms that made me aware something was wrong and I went my family doctor (Dr. Daniel Yim, North York, Toronto) and was ultimately diagnosed with thyroid nodules � right lobe, all smaller than 1 cm so no surgery required. During this time, I collected 12 weeks EI Sick Benefits and my place in the SEAP was held for me and I was to go back on the Program when I was better, or not, if, for eg., the nodules had proved malignant.

The process by which I applied to the program is important to note as it directly relates to the current situation.

When I applied in Windsor, Ontario, I was told by the EI office to attend an information session held at St. Clair College from where the SEAP was conducted. I was told that it was staff who conducted the program at St. Clair were the ultimate decision-makers as to whether or not applicants were accepted. Once that happened, applicants sign a 1-year contract (subject to periodic review as to progress in the business) which is the length of the program.

I applied, I was accepted. At that point, John Alexander, HRDC - SEAP Co-ordinator for Windsor, came in to St. Clair College, we signed the contract, and I began to get $300 week through that program ($1,200/month which supplemented existing funds I had that could, because of the program, afford me the opportunity to make it �work�. I had access to my own money but I could not have afforded to do �both� set up a business and live. I could not go on regular EI benefits because of hyperacusis and availability to be �anywhere and everywhere� re work � unless I didn�t mention to an employer about the hyperacusis. I did not want to go on Disability. The SEAP was �perfect� for me and afforded me an opportunity to be independent and self-supporting within the limitations imposed upon me by my diagnosis of hyperacusis.

http://www.afaulkner.com

With links to websites for which I have made/restored all the graphics, as well as designed the sites.

(This site is no longer a business website consequent to restrictions I am under now that I am disabled but I hope to continue to use it more as a portfolio if I can afford to keep it re website host.) as an example of the quality of my graphics, (other than some of the ani flags, I have made all the graphics (all sets) on the following domain: http://www.glanmore.org

I have examples of medical graphics I have made for print and presentation, but they are not online as I do not hold the copyright.

Ultimately, I was accepted into the program, did what I needed to do re: registering domains, finding a host, designing the site, getting DIGIMARC protection for images, getting an online portfolio together, getting credit cards to be used with respect to this work. As advised by SEAP staff, I did not have to register as a company as I was using my own name. Everything was going according to plan.

Out of the blue, I get this �thyroid nodule� diagnosis. I advised SEAP staff in Windsor and was put on 12 week sick benefits through EI. The SEAP staff in Windsor kept me on the program, pending final outcome of my medical investigations.

The physicians in fact did have to rule out malignancy � by anybody�s standard, that is stressful. During this time, it came to me that, if they were malignant, I had no family / support systems at all in Ontario anymore. Over the years, they had all moved to BC. (I have 3 cousins in BC). Ultimately, the nodules were not malignant but, I was still very aware of the fact that I had no-one in Ontario. My son is in Alberta. I have worked in Oncology � and I know what the patients go through. It was all too overwhelming a situation to contemplate.

As well, since I had decided to move back to BC after the program and even though it was an online business, it still made sense to find out if I could move out there and network in the area I was actually going to be living in.

But the decision as to when I would move all hinged on whether or not I could transfer the SEAP to BC from Ontario. I certainly was not going to commit to a 2,500 mile move If I couldn�t, I had to wait.

So, I did �exactly� what I was told to do by EI in Windsor initially. In November, I found, online, through the HRDC website, links to the SEAP Programs in the Lower Mainland Vancouver area. I found Douglas College in Coquitlam. I called them and asked them if I could transfer the program out to BC.

I was told by, I believe her name was Rita, that I could transfer the program as it was federal and that all I needed to do was to get a funding number from St. Clair and bring it in to them at Douglas when I arrived in BC. This was because I was already on the program, it was federal, and they transferred people �all the time�.

I contacted Judy Simard, Program Manger at St. Clair, and asked her for a letter with the funding number, which she gave me (attached). I also contacted John Alexander, SEAP Co-ordinator in Windsor and he said he would put the paperwork through. I gave in my two month notice on my apartment on Dec 1st, 2003 (it was rented within a week) and began shipping things out to a storage place (by Purolator re: cost). I bought my train ticket out west (cheapest way to go and I could take my cat and up to 12 pieces of luggage/boxes incl. I had people waiting here � friends and family � to help me get settled quickly.)

After all this was done, and I had passed the point-of-no-return in this move, the phone rings (I had remembered this as being before Christmas but, looking at the attached letter and it�s dates, it may have been in early January that I got the following phonecall. I can get my phone records if asked because I returned calls).

It was a Lynn Grears, Program Officer for the SEAP, calling from the Vancouver office (ph: 604-945-1651), who proceeded to advise me that all this paperwork arrived on her desk and she had no idea who I was and was not going to be approving my transfer to BC. That she was, in effect, taking me off the Program.

I said to her that I had been told by the SEAP Program staff at Douglas College that I could transfer with the funding number and that no-one had told me that I needed to contact her or that, in fact, she existed. She said that �was not her problem, she was not responsible for what the SEAP staff say�. I asked her if she was interested in seeing my Business Plan, website, etc. She said that was not her responsibility and she was not interested. I told her that I had to be on the SEAP program re: hyperacusis, and that I had in fact included a letter to that effect from my family doctor in my proposal at St. Clair College.. She said that was not her problem, essentially.. that if I wasn�t able to work like �normal people�, then there was �always� Welfare if I didn�t want to be homeless.

I told her that if she cut me off, I was going to lose a lot, that I would not be able to afford to move the rest of my things, would not be able to pay 1st/last rent �and� pay business expenses. That what she was doing would potentially destroy my credit rating. She said that was not her problem. She said, �Well, you still have a month of regular EI benefits left. I told her that, because of the hyperacusis, I could not register in an agency � as I used to be able to and work the next day, etc. that I had to be self-employed or find an employer that would let me either work at home or give me my own office (I have had �one� employer in 25 years that let me work at home). She said, that�s not my problem. So, finally I just asked her.. �You are saying to me that because I did not get �your� permission � the fact that �no-one� in HRDC � or Douglas College told me I needed to. You are telling me that you are not responsible for the Program you are hired to Co-ordinate and that I can potentially be homeless because of an HRDC error in communication? She indicated, contrary to what HRDC says on its website, that I could always reapply in May, 2004. I asked her what I supposed to do for the intervening 4 months re: income. She said it was not her problem. I told her that I had, in fact, put in my Business Proposal a Doctor�s letter supporting this � but she wasn�t interested in seeing it � or my website, any of my work, my Business Proprosal..nothing. She said it wasn�t her decision about whether or not I was in the program (which begs the question, how was it her decision to drop me from it). She mentioned something about funds being allotted provincially and she had no funding left and could not (read: would not) transfer my funds from Ontario. That it wasn�t a �federal� program. I told her that she might have instructed her Program Staff to speak to these things � I was, after all, committed to a 2,500 mile move. I told her that, if she didn�t transfer the program, I would lose �everything�. All she said was.. Well that�s your problem.

I can say that, although I was last diagnosed as depressed c 1985 (15 years ago?), all these psych diagnoses � the anxiety, panic attacks, borderline issues, agoraphobia- everything is new to me.

I have not spoken to any HRDC staff since.

I have had no income since Jan 31, 2004 but have been paying my bills out of what was left of my own money, while still maintaining my capability to work. I get here and subsequently find out that � I have, over the time since December.. what the Doctor�s have listed on the Application for Insurance.

Because of the SEAP criteria, I don�t know how to answer the Employment Section of the Form. Was I self-employed? Yes, under the criteria of the SEAP, you set up your own business.

Or was I �fired� by Lynn Grears?, in that she essentially wiped out half my monthly income and they were taking deductions out of the $300/week � CPP, Tax, etc. - through the SEAP.. I don�t think she had cause given the effect and the fact that all I did was what I given permission to do by HRDC or its �agents�.

I �know� that the funding �could� have been transferred if someone in HRDC had had a mind to.

Consequent to this, attached please find my application for Balance Protection.

In any case, I am sorry it has come to this � re: applying for Insurance. I have tried to avoid it, hoping it wouldn�t come to this, but, as noted in the Physician�s report, I am now dealing with issues that I have never had to deal with before and it has all become just too much right now.

I have acted in good faith in all of this.

Please also take this letter as a Consent to Release Information for Human Resources Canada if that is what they say they require in order to sign the Employment form of these sections.

Sincerely,

 

 

 

 

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Author: Janice
Date:   08-07-04 22:58

I wish these stories would be written on the front pages of top newspapers, because people have such an adverse reaction to people who don't work, yet an MP in Toronto was reading a homeless man's letter to him, and in response replied that if he could write a letter, he is intellegent enough to work.
Someone who complained to a lawyer after waiting over a year for her sons birth certificate, but the name was in error, is going after Liberal miscommunications, and that's what it is!
When Paul Martin went through the scandal, him and everyone else denied everything, just like criminals.
Retirement is mandatory for people over 65, but they can work at their age, and take away chances for a younger person and their family to work, it's criminal.
You need to know how to work through the system. And the laws are created to protect the higher ups and corporations. I'am sure none of this is news for you though, but had to mention all that.

I'am in the process of applying for welfare almost, and my apartment for social housing is waiting for me. I'll have to wait 9 months for Ontario Disability Support, and with everything I know will most likely have to appeal, and only then will I be allowed to work part-time.
I'd like to now, but if I do I won't be able to survive or do those things I need to do or want to do, and there's so many variables and reasons why I can't work.
Agencies want me to go on Disability, yet won't write anything on paper for my doctor to see, and unless they have been affected by noises to the point where they can't cope they don't know anything!

But what that lady has done in BC in so wrong, so so wrong, and somebody in the system in to be held accountable for what went wrong, because none of it was your fault. I know there's a "Right to Quiet" Society
in Vancouver, but that's all I know - I have read that in the newspaper a while back. They should be able to help.

You have none nothing wrong and the gov't is screwing you and you can't do anything about it. It's very typical of people who are the undesirables in society to see this but it's not understood by society.

I live in Toronto, and in my opinion if the medical doctors had told me and gave me the information I needed back in 1996, I would not be in my situation today, and would not be applying for disabilty or social assistance, and it's the medical field that should be held accountable for my situation not me, but that's like going against the Medical Mafia and the gov't.

What about the Ombudsman?? They should be able to help or direct you to maybe someone in the media who helps like Silverman as a lawyer?

And if the gov't moves like snails and can't get anything done, then they should hire people like us to work at home or in quiet offices!

Sorry I couldn't respond earlier. Post later.

 

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #3 

Author: Janice
Date:   08-07-04 23:17

I searched the Right to Quiet society, very good to have as a bookmark!

Here are the addresses and numbers you should call, I really hope they can help.

Right To Quiet Society
359-1985 wallace st.
vancouver, b.c.
v6r 4h4
Tel: 22 0207
Email: hsquiet@vcn.bc.ca


Right to Quiet Society for Soundscape
Awareness and Protection
#359, 1985 Wallace Street
Vancouver BC
Canada V6R 4H4
Phone (604) 222-0207
http://www.quiet.org/ Everything below taken from the site at http://www.quiet.org/

Barron Kennedy Lyzun & Associates -- a private firm in North Vancouver. Their site contains much useful information
Bibliography for Sonic Studies -- prepared by Barry Truax of Simon Fraser University
Oldenburg University Acoustics -- Conducting psychoacoustic research on annoyance level of sounds. See also "Acoustic Nightmare" picture on this page.

(For others)
The Noise Abatement Society -- British society based in Brighton. Advocating for noise-sufferers for over four decades, responsible for the introduction of the Noise Abatement Act, their Helpline can be reached at 01273 878782 on weekdays between 9am and 5pm.


http://www.balanceanddizziness.org/
BADD - Balance And Dizziness Disorders Society - Vancouver, BC, Canada
Support for people with balance, dizziness, and related vestibular and hearing problems - through
public awareness & professional education & self-help group supportive activities.

Jacke Palmer, President 2003-2004
e-mail: info@balanceanddizziness.org
#325 - 5525 West Boulevard
Vancouver, B.C. Canada
V6M 3W6
telephone 604-878-8383

Janice.

Do they have a place where the lawyers help people with disabilities nearby you? (ARCH) ((They should)
They usually have a library of books and magazines and some of those can tell you some stories about what has gone through the system.

An audiologist who used to work for the Western Hard of hearing society many years ago, now retired (haven't been able to contact her / don't even know the name anymore? she was helping somebody in Vancouver to receive some compensation for acoustic trauma from powerful hearing aids in the early 90's. I tried to reach this women myself, but haven't heard a thing?
I found out that information from old newletters of the Canadian Hard of Hearing Society, and people who are hard of hearing usually don't know other people who are hard of hearing, and have no clue about sensitivity.

Janice

 

 

 

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Author: Maria
Date:   08-08-04 05:13

Thank you both so much. I've been busily sending copies off to some of the assocations you gave me Janice. That's great.

As much as I love medicine and working in healthcare (when I could still handle a clinic, etc..), some Docs are simply a little too paternalistic for my taste. I recall one I had who prescribed amytriptyline for me ref: sleep disorder/fibromyalgia. I have been "exquistely clear" <G> with him about not taking _any_ medication that had a side effect of weight gain. After I had taken the amytriptyline for 3 months, I gained about 40 lbs and my diet had not changed at all. I went to see him, he advised me of that side-effect happening on occasion (I've read the Pharmacopeia sp. as well and I understand statistics. As I said, I had been "exquistely clear") He proceeded to tell me that "he" had decided that I couldn't afford, as a single parent, the more expensive medication that had no weight gain.
Unconscionable.

Welfare social workers who cut patients off the one medication that'll control their seizure disorder (I called her and asked if she had a license to practice medicine). Fortunately the drug rep for the company happened to be there when this was all happening and very quietly, without saying a word, went to his car and came back with a free 3 month supply for this kid - enough to last this kid until the Welfare business got straightened out. It was some special circumstance Health Release drug - "very" expensive and that was very good of him.

When my son needed inpatient treatment in Toronto for ADHD, I was told by Social Services that, if I was not prepared to quit work, (U of T Bioethics I ultimately had to because of social services/education/health miasma of pass-the-buck conduct) and quit everything to stay home with him) that I could always give my son up for adoption... that happens alot in Canada. I've seen newspaper articles since of other mums/kids being put through the same thing. The reason for all of this (you guys reading this from the US.. this is the real skinny on socialized medicine in practice <G> was because there was a 3 year waiting list.

You mentioned going to the media or their running stories on things like this. I did, in fact, contact Michelle Lansburg and she put a column in the Toronto Star (my real name, my son was aka Anthony). He had a bed in about a week. In point of fact, at a meeting consequent to this to which the Head of Children's Aid in Toronto came (because these gov't services had started that band wagon, she said to them at this meeting that the only person/people my son needed protection from was his government.
Good for her!!! Someone with some guts.

I was "not" going to lose my son or give him up. He was not.. "disposable". If that was not.. "convenient" for the system? Too bad.

So going to the media does work but I think you're right.. And I think she wrote the article because my son was 10 and one of "many". I don't think that any Canadian media (especially the CBC) would ever do a story on an adult effectively in the same situtation. Maybe the Issues Channel.

As for me? I don't care if this on the front of any newspaper tomorrow. I know I'm talking about personal stuff but it's all true and I'm angry.

A truly sad thing that I have found is that everyone here that I have talked to about disability issues "appears" to be so ground down by this system that even they have accepted that "that is the way it _is_" in Canada, and accepted it as something that cannot be.. addressed in focus. While this is not a game, that's a win for a gov't that clearly does not want to think geometrically but rather out of convenient self-service not to rock the status quo (there's something hinckey in this). I don't believe that nothing can be done. The government, in its conduct, does not represent the Charter of Rights. The fact that they "are" the government should only make them more accountable, not that they are responsible for "nothing".

If you think about it, I have a federal ministry telling me I am useless to work pretty much and should just.. pack it in and go on welfare, etc., "meanwhile" Welfare is provincial and they treat you like you are a conniving drain on society and you lose what little you have left because you can't "have" anything... To say they are obstructive is simply euphemistic.

I once suggested to HRDC.. rather than tell people to go on Welfare all the time whenever you delay claims because you don't have enough staff to process them - why don't you "hire them" to process the claims - and keep them on staff so there are no more backlogs of 6-8 weeks? Why is the ministry that is the one that is "supposed" to help you work the one whose kneejerk reaction in avoiding accountability/responsibility for their erros, is to cut you off your benefits - and "they" tell you to go on Welfare like it's a.. life choice.

You would have thought I'd done something unpleasant on their rug lol

Then, it doesn't "do" to speak to the unspoken logic in all of this to anyone in those ministries. They don't want to hear it.. Their eyes.. "glaze".

Warmest regards,

Anne

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Author: Janice
Date:   08-08-04 13:13

I have to purchase the Nexus Magazine again, in the current issue is an article explaining the legal issues.
I'll post later.

 

 

 

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Author: Janice
Date:   08-08-04 13:23

Just wanted to let you know, I'am doing a little search myself for the following:

Found "Laws for people on welfare applying for disability in Canada"

RJR-MacDonald Inc. v. Canada (Attorney General)

The Experience of People with Disabilities in Ottawa and the Ontario Disability Support Program (ODSP)

RJR-MacDonald Inc. v. Canada (Attorney General)

Human Rights Program

Egan v. Canada, [1995] 2 S.C.R. 513

Abuse and Neglect of Older Adults in Institutional Settings, (NCFV), Health Canada

welfarebooklet

VIOLENCE ISSUES: AN INTERDISCIPLINARY CURRICULUM GUIDE FOR HEALTH PROFESSIONALS, NCFV, Health Canada

Women and the Canada Health and Social Transfer: Ensuring Gender Equality in Federal Welfare Reform

 

 

 

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Author: Liam
Date:   08-08-04 18:32

Hello Maria:

Janice E-Mailed me to please pay attention to your post, which I have now read twice. Unfortunately I can find nothing concrete in writing saying that all is well, the paper work is now complete, and welcome to this new province. Forgive me if I am wrong.

I have typed out a few points.

Your quote� �But the decision as to when I would move all hinged on whether or not I could transfer the SEAP to BC from Ontario.�
Maria, each province has its VERY separate governing bodies, and deals with Federal funding entirely their OWN way. And each province is VERY different as to what they provide re universal medical care, Employment Insurance benefits and so on. Little is Federally interchangeable. Not even driver�s licences or doctor�s degrees are transferable � there are hoops to go through and always paper work to be completed, for moving to another province, means living under someone else�s jurisdiction and their government's specific administrative guidelines. Yes � some of the supportive monies comes from the Federal Government, and some supportive programmes are Federal, but EACH province operates in their own way as they see the need.

Each province also offers hugely varying programmes for employment assistance and virtually anything else - some programmes of which are non existent in Ontario but definitely going strong in other provinces.

We each, disabled or no, have a responsibility to do the best for ourselves to get ourselves better � healthier � and/or protect ourselves from further damage. BC is one of the provinces that is quite aware of Hyperacusis. Personally fitted silicone ear plugs are worn by many with Hyperacusis, in order to keep a job, or keep their sanity and most important, to protect their ears and retain their lifestyle. As in those that have the option to acquire correct braces, electric chairs, hearing aides and etcetera - you also have the option to acquire correct and approved ear plugs from the audio professionals.

Unfortunately a lot of people think they have �such and such� as a health problem, and natter on endlessly - am sure you know this type. So you have to provide �ammunition� to prove each point, in order to get above the ones that just natter endlessly � for the government funding authorities become quite turned off with hands constantly reaching out for freebees. Providing a copy of your diagnosis which says you have Hyperacusis and which also provides, the degree of trouble it provides you is essential. But then, you will also have to respond to queries (if you are lucky) as to why others can work with appropriate hearing protection ? Also, I was interested that you can manage to stand the hum of a hard drive - then what are your specific concerns with an office environment.

So that gets down to who imposed your limitations, and just what are - - those limitations. There are many and varying degrees of Hyperacusis. These points will seem 'not fitting' to the government authorities.

It is perfectly reasonable to find that the BC Provincial funding pot, was empty when you applied. However, and again � there are hoops to go through, and paper work to be filled in. A certain process must be followed for moving to any new country � or any new place that has its own and separate guidelines for how they spend their finances.

Unfortunately, BC and especially the lower mainland, is yearly deluged with peoples arriving from Alberta and further east, and all demanding help to live within BC . . . sticking their hands our for monetary help. So � with this in mind � I would suggest, that you might wish to take another tact and ask just �what can YOU do�.. to make this work. Perhaps you could approach the much overworked government authorities this way.

I highly suggest you try another tact Maria. If you want to E-Mail me, you are welcome.

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Author: Liam
Date:   08-08-04 18:39

Maria:

I should have also responded that I have severe Hyperacusis.

 

 

 

 

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #4 

Author: Maria
Date:   08-08-04 21:27

Hi Liam,

I'm not quite sure what you are trying to say here.. define "take another tack" please :-)

I signed a contract with them for a year. I got permission "before" I came out here from Douglas College in Coquitlam who run the program. Yes, things are clearly very diferent out here in BC. However, it would have been more appropriate, methinks, to have them tell me that "before" they gave me permission to transfer. And "then" to have someone who I have never even heard of tell me that she has decided that she is not going to approve my transfer without even seeing my business plan or any of my work, my CV, references.. all of it.... For anyone to suggest that I should "go along" with it - and being told literally that I am useless because of hyperacusis? No.

That contract that I entered into with them has cost me about $30,000 of my money as well as an art collection that I had to abandon in Windsor because I could not afford to move it..

It is not that I had a choice. Half my things were out in BC by the time this .. "deleted" phoned me to let know that she going to do what she did regardless of any consequence to me. My ticket was bought. I had a choice. abandon 1/2 my things that I had already sent - which I could not do because much of it was related to being employed.. or not. I could not afford to ship things "back". I told this woman about this as well. She said, if my staff gave you the wrong information that's not my problem. If you can't work like "normal" poeple, you can go on welfare... and that's Human Resources and Development Canada who make great pronoucements about how they are reducing the unemployment rate. Yes, they are. They are putting everybody on Welfare !

Quite frankly, there's not too much they can do to me that they haven't already done.

Regards,

Anne

 

 

 

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Author: Maria
Date:   08-08-04 21:42

p.s.: As for the paintings, I had to leave about 300 of them. Since you are in BC, maybe you have heard of Toni Onley, the artist. He is (was - he was recently killed in a plane crash near where I live.. terrible thing) an old friend of the family. My mother and Toni were part of the contingent that went to San Miguel to study art in the 50's - They took their kids with them. I grew up with his daughters. More information than you need <G> the point is.. I did have this worked out based on the word of HRDC.

I rememeber hearing a story about a little Scottish boy who asked his mother why they always cooked the leg of lamb in a pot that was too small, with the end hanging out. His mother told him it was a family tradition that had been going on since she was a little and said, "Ask your grandmother." which he proceeded to do. His grandmother said: Well, one dinner I'd cracked the proper pot, so I had to use one that was too small for the lamb..

I guess the point I'm trying to make is.. just because it's been going on, doesn't mean it's "right".

If anyones in that beaurocracy dares to infer that I came out here to go on Welfare, I will provide them with receipts for what HRDC cost me and they can damn well reimburse. Yes, I don't have funds right now. Investing in a businesss through a contract with HRDC was clearly a stupid thing to do. They have financially wiped me out. The money I did have left, I've been living on for the last 7 months. I did not come out here and run to the Welfare office. That was HRDC's suggestion, not mine.

And No, it is "not" ok..

None of it is.

It's not that I have anything against it. I collected Welfare for a couple of months when my marriage split up, 'til I got Daycare, job, etc.. but for me to go on Welfare because of "this"????

I don't think so.

on the other hand, I am truoly tempted to just go thorugh that whole degrading process (because they will act as if I came here to do what you suggested above) and "document it all".

I did not have any of the psych diagnoses I have now before I got that phonecall from HRDC.. and that is in my medical records.. That woman tipped me right over the edge.. and she wiped me out of any possible investments I might have (re the art collection).

No.. it's not OK.

Regards again :-)

Anne

Take care

 

 

 

 

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Author: Liam
Date:   08-09-04 01:23

Hello again Maria:

In reading my post over, I realize I could have been more clear. I was trying to clarify the reasons for the more or less �brick wall� you appear to have run into when asking for government transfer. And � I was trying to explain just how VERY much they are inundated with requests � and that the monies are not in great supply, usually being depleted before the start of the specific �year�.

I read your �signed a contract with them�... but before this happens, one also has to have approval from the individual Provincial Government legislation. I can obtain permission within a hospital to teach, but I first have to have the individual governmental approval.

Few, when approaching the government for aid, and reaching this �brick wall�, change tact . . . but approach the government with what they think is righteous anger. As you have reached this point, it is a good thought to instead ask them, what can you the individual do, to improve your chances - to open doors of opportunity.

Your thoughts that the government is putting everyone on welfare is rather extreme � for in at least the province of BC, welfare has been cut exceedingly short with encouragement to get out and work. Also, being able to qualify for welfare, is not easy in BC � and especially, if you have arrived from another province.

Your quote: �If anyones in that beaurocracy dares to infer that I came out here to go on Welfare, I will provide them with receipts for what HRDC cost me and�

Maria � as I said, the mainstay come to BC for this very reason � therefore I think it a positive suggestion for you to take a different tact. Many won�t bother you with inferring same � but they will most certainly think this. You cannot expect others to be mind readers. You have to get out there and literally market yourself to the government. Make it very clear to them why they should spend money on you.

You might consider approaching your predicament as if you were hoping to be hired by a specific employer - and therefore before the interview, you would think of the myriad of matters that you as that employer (reverse roleplay here) would want to see in the new employee - and speak these points out very clearly. In other words, sell the heck out of yourself when you next contact them. If you bring up the financial losses you are experiencing, this will unfortunately only confuse the issue, for truly it is not their concern.

Also - It will be confusing for peoples to hear that you have Hyperacusis which you say is debilitating, to the point you must work at home - and yet they next hear that you have completed the stressful hassle of packing up lock stock and barrel - moved across country to a completely different province � and yet you cannot work outside the home. Also � that you can work around a humming hard drive, yet be unemployable for work - and you do not mention much needed ear plugs for protection. These points will need substantiating.

I hope very much you can get rid of your very present anger - or at least tamp it down, in order to see clearly, and especially so you can view 'the other side's' view point � the one with which you wish to work.

Not easy at all I am sure Maria, but anger is strictly a waste of energy.

Good luck.

 

 

 

 

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Author: Don 
Date:   08-09-04 13:22


Dear Liam:

I haver never used a message board beford so I hope I am doing this right.

I live in Surrey.

Having read your message about dentistry, which has been a real problem for me, I would really like to e-mail you, or send an IM if you are on AOL.

How is contacting done on this board?


Regards,

Don

 

 

 

 

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Author: Liam
Date:   08-09-04 21:00

Don:

Just click on my 'handle' of which the font is in blue - and it will provide you with my E-Mail address.

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #5 

Author: Maria

Date:   08-10-04 01:50

Hi Liam,

I guess I am angry. I can't help but see myself as a.. microscosm to the macrocosm, because I know it happens all the time, and clearly, has become through that.. an accepted practice.

Not for me.

First tho, you mentioned your hyperacusis.. and how I could stand the sounds of computer. I get impression they bother you.. I am sorry that but I have to say if it got to where I couldn't stand a computer sound (and some I can't), but I would be in.. "it".

I've been reading literature on hyperacusis - both through PubMed and other resources. Apparently, it affects people in different ways as to tolerance to different sounds, frequencies, etc.


Also, you said that it would be questioned how I made the trip across Canada if my hyperacusis was so bad.. and although I don't think I should to have to "prove" anything to these people, I can :-)

How I moved with hyperacusis - (fwiw and in case it might help others).

I had been having to go to Toronto for the oncology investigations because there were no services or waiting lists were too long (and I know alot of Docs on University Avenue having worked in all those hospitals over the years.. if push came to shove re: surgery, etc.. I would have called them.)..

During those trips - I hadn't been on a train for 8=10 years - and "that" was torture.. In any case on one of those trips between Windsor and Toronto, I applied for a Via Preference membership (which is free to do).

After getting the phone call from HRDC, I sure had to rethink what I could bring - as opposed to what I had to abandon and things got revisited..
I had to bring my computer.. My mother's art collection - I had 60 years worth of paintings and other artists. Now that could have been.. who knows? nothing to thousands of thousands of dollars. I can only go by a low average on her prices - it's not fair to guestimate high - paintings of hers have sold for "alot" at times, but not always, etc.

So.. taking a low average of about 300 paintings, say $200 bucks each x 300 - I make it $60,000. Was she any good? My opinion is not educated or objective so let's just say that she was good enough that one of her paintings was selected to be given to the Queen for the Diamond Jubilee and is now in Windsor Castle (if it didn't burn - awful, terrible fire).

However, Because I was coming out by train and my income was cut in half consequent to the HRDC decision, I had to choose between things like my computer and that collection. I had to leave alot of antiques as well. I knew that if I came out by train I could bring 12 boxes with me - and my cat - who is my mostly companion.

I also knew that.. I was in some.. "Clear and Present" risk as to being able to work.. and I "had" to have my computer and peripherals for the same reason I went on the Self-Employment Program.. hyperacusis.

I knew that there was no way I could make it across Canada in tourist class - radios, kids, etc., so I got a lower berth - which was a bit more expensive but not by much when you factor in the included meals - which they are not in tourist. I also spoke with them before I took the train and as well when I got on in Toronto and told them about the hyperacusis and could they please put me in a .. quieter car if at all possible. Particuarly groups of partiers and families and.. and music - headphones regardless - because I can hear them - at the other end of the car, in this case.

So that background gave me a experience in integrating references
Other than a wonderful gentleman, 80 years young, who was in my car part of the way.. and who spent the day in the Observation Car and was asleep by 7-8 and did "NOT" snore (Thank you God, she said), they actually moved people to other cars before they got on if they similar accommodation in others. Because I travelled during the middle of the week and at the end of January, it was low traffic.

Thank God VIA had that consideration and thoughtfulness. Otherwise I would have had to fly (only 6 hours of noise and airport time but not 3 days) and leave even more things in Windsor.

On hyperacusis, alot of my background in medicine is really.. editorial manuscripts/grants, edited hospital manuals (OR, Molecular Pathology), (btw, when I was working for Chiefs of Staff so I always had my own office and had no problem.. I could always go in shut the door when there were.. too many people around in the hall, for example.. The only time I ever had a problem was when they put me in a general area with alot of people in it. I would have had to leave but I had to have a rather emergent surgery (again, a suspected malignancy that wasn't) so it became moot at that point. Emergent? the Docs told me - at the hospital I was working in - said.. you need that surgery "now", sent me home.. and I had it within a week (come to think of it, I was denied for benefits for that too.. Why? I was an hour short on qualifying totals). So, I was discharged postop with no income and expected to work - I had an abdominal incision approximately 13 inches long.. I could not.. "comply".
Yes, that is "within the legislation" as interpreted without any humanity at all, but it is .. "legal".

So, my background is one that I get on the internet and research.. Pub Med, places like that.. reference searches.. It's interesting.

I've read that hyperacusis affects different people different ways. I get the sense that computers bother you? If they bothered me? I'd be in real trouble re: working at all.. It's always been so difficult to explain this "thing" to people. I don't understand decibels.. frame of reference - equating levels, 60dB or 40dB with particular sounds.. So how could I explain it to people when I didn't really understand it myself.. What decibel level is a.. bird chirp, I had no idea.. just knew they made me crazy..

So, as is my predeliction, I did some internet searches to find something that I could use to show people.. a "visual". I found a graphic - maybe this board has seen it before..

and.. lo and behold.. Eureka.. I found one..

http://www.va.gov/621quillen/clinics/asp/Products/PRIMER/pri-diagnostic.htm

I do believe that hyperacusis affects people differently, just from this reading this board, it is self-evident. If I am correct in assuming that computers are difficult for you, that is one of the effects of it for you. If you go to the chart, there may be other things..but they correlate with frequency and decibel.. at least for me, I don't have to talk in terms of decibels, I can "show them".

Now based on that chart, it would be simpler to tell what "doesn't" bother me. The hourglass, airplanes, some helicopters - I used to sit out on the lawn at the Eaton wing and watch them land on the roof of Sick Kids. The sound didn't bother, albeit it was 15 years ago. Otherwise, birds chirping in the morning have bothered since I was teenager, family dinners - hate them - big AVOID.. Vacuum cleaners - only absolutely necessary.. with earplugs.. Iwould rather pick it up by hand or sweep. Motorcycles.. Harley's (with muffler) don't bother riding by (as they do where I am), but somebody's really got to do something about those Japanese things.
I was attacked by a pack of dogs in Mexico when I was a kid so I concede an instinctual shie on being approached by one, but I "like" dogs. I won't have one in my house or next door kind of thing. Can't do the barking.
(I'm just going through that chart..) Phones.. and I am quite sure I am not alone in this.. the Musak when you are put on hold. I have to hold the phone as far away from my ear as I can which results on many occasions that I don't hear them when they finally do pick up and then I have to call "again". This is particularly difficult in circumstances such as the current ones because - of course - everyone tells you have to call here or there.. Sometimes by the end of the day, I am in tears..

Working in an office.. it's not the computer sounds (most of the time).. what it is is 10 computers, flourescents, phones ringing, keyboards clacking, people eating, multiple conversations going on around me while I'm on the phone.. I lose it.. I actually did start to cry one day because the other women who were in the room got angry with me and told me to .. well.. it was not "polite" (THis was a job in which I had very clearly spelt out that I had this hearing "thing" and I asked them to please not hire me if they could not provide me with a quiet place to work.. (Yes, I said "please", because I had already had to leave 3 jobs because of lack of accommodation). They hired me and put me in an office that was probably out 8 x 12 - with three other women.. It was disability insurance testing place.. so think about the phones. They also had rap music playing all day.. I remember about my last day there, one day after pleading with them to turn the radio at least "down", the response being.. Who are "you" to tell us what to do? Just get out of here.." I broke down, just sat there and cried - (and, for the record, I hate that kind of display.. it is not.. "seemly"), but I coudn't do it anymore.. Of course, under HRDC legislation, I had "quit" and didn't want to work. I never even bothered to contact them to apply.

I'm into medical ethics very much.. I apply the rule of "Do No Harm" to anyone that is in a position to made even remote decisions that will affect health, disability, etc. I do not believe that, for example, a welfare worker can cut (techically they can) with no medical background "at all" can (should) cut people of the one medication that will control their symptoms without any consultation with that patient's physician. They "are" in effect practicing medicine without a license. and I have seen it done, because I've met patients who have had it done to them.. Seriously ill patients. They get cut off because a worker "decides" that it's.. too expensive (Health Release drugs, in particular) - with no thought at all given to the.. "patient" which is what they "are".

And it is "legal" within the legislation.. and I respectfully submit to you that the legislation is "wrong" as it is interpreted in practice by these individuals. There is no way on this earth that anyone should do that..
This is a simplistic example and doesn't happen alot - at least I hope it isn't - (because of cost, I am sure) but what I have seen justified in terms of being authorized by legislation.. It's the same as if.. lets say you were a diabetic and on Social Assistance.. Your worker decides one day that your insulin costs to much so she cuts you off.. What is the impact of that on the individual. I guess they can appeal.. assuming they are not in a coma or "worse" ..Fortunately insulin isn't.. "expensive".

It is legal..

I have crossed the line enough in terms of speaking to potentially confidential issues.. for the "patients".. I know it happens because where do they come when it does? their physicians.. and I've worked for them and they talked to me while waiting for the Doc and I typed the consult notes..

but is is legal.

that's enough on.. "others". My point is.. there are many things that are "legal"..

On a lighter note, did you know that there were still laws on the books from back when.. that horse stealing is a hanging offence? Maybe it's in the states, but I think in Canada.. So, I guess if I steal a horse, they'll hang me? That was based on 1860's.. when if you stole a man's horse - you could kill him if he was in.. the Badlands.. I really don't think it would apply in 2004 but.. "technically" it's never been repealed.. You won't find it in the Criminal Code either. Someone made a list of crimes from the 1800's that were still in effect.. Ride your horse into town.. was a crime, things like that..

my understanding was that the Law, BNA Act, British Common law is supposed to evolve with the society it lives in.. I believe our Charter of Rights is based on that..

I have spent some time looking over recent decisions and the reasons for judgement..

I came up with these three..

Mobility of citizens
6. (1) Every citizen of Canada has the right to enter, remain in and leave Canada.
Rights to move and gain livelihood
(2) Every citizen of Canada and every person who has the status of a permanent resident of Canada has the right
a) to move to and take up residence in any province; and
b) to pursue the gaining of a livelihood in any province.

Limitation (3) The rights specified in subsection (2) are subject to
a) any laws or practices of general application in force in a province other than those that discriminate among persons primarily on the basis of province of present or previous residence; and
b) any laws providing for reasonable residency requirements as a qualification for the receipt of publicly provided social services.

Equality Rights

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

32. (1)This Charter applies
a) to the Parliament and government of Canada in respect of all matters within the authority of Parliament including all matters relating to the Yukon Territory and Northwest Territories; and
b) to the legislature and government of each province in respect of all matters within the authority of the legislature of each province.


It's not just about "me" you know.... I am only a microcosm in a very big (sadly huge) macrocosm..

Take care,

Anne

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Author: Maria
Date:   08-10-04 05:27

sorry, one of the things I forgot to mention re: the hyperacusis and precipitating factors. I was a music student for many years. I had started playing when I was about 4 and stopped "studying" formally when I was 30 (I had hurt my hands - pulled tendons - nothing to do with hyperacusis.
Harp and piano (it was the harp re: tendons).

In any case, I "always" had very acute hearing. In music, that stood in good stead for awhile because I had perfect relative pitch "acutely".
I never joined group things growing up.. they were always too loud.. playgounds, Girl Scouts, that kind of thing. Fortunately I liked to read :-)

I've read that loud music can cause it. The only concert that I went to was actually here in Vancouver about 1974.. It was an Emerson, Lake and Palmer concert - Eric Clapton. The decibel level had a lot of people have to leave because they got sick - I seem to recall it was in the papers here at that time.. I know I threw up and I had to leave.. I have never heard sound levels like that before or since. A Close Encounter of the 5th kind, as it were..

fbut that is the only "acoustic trauma" I can think of..

Having always had a.. sensitivy growing up (everyone that has ever known me can speak to it) I guess I never really paid attention to it - because it was the way it "always had been".. not until it started affecting my ability to work.. then, it became more than .. whether or not people could live with me (and they can't - there's plenty of evidence for that ..).. Can't you do the dishes "quieter" can't you turn that damn TV down? Will you "PLEASE" stop jingling those coins in your pocket!!!! Now!!!????

Flicking through remotes.. those rapid changes through the channels , No way.. Announcers in sports??? Absolutely not..

I never could stand picolos, I could never listen to Joan Baez (she's got almost a.. pure tone voice.. she hurt my eardrums..).. Buffie Ste Marie.. can't listen to her.. or "anyone" with that kind of a vibrato..

Of course, car horns, all that.. jackhammers.. air brakes on trucks

and like that.. I'll will never be able to live with anyone again.. I really am impossible to live with because.. I can't stand the noise .. but that was OK.. but.. not being able to work??? that was "not" ok.. and clearly, because I loved what I did so much.. I wasn't looking for .. an excuse not to be there..

Nobody "wants" hyperacusis, I'm sure you'll agree..

Maybe I've always had it.. I honestly don't know..

Anne

So I went to an ENT Doc.. I was afriad that I had hyperacusis..I'd been putting my symptoms in Google and that was what came up.. and I had to find out.. I was told that I was probably too old for any retraining therapy because of the prior history and that it would only get worse.. I don't know..

 

 

 

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #6 

Author: Liam

date:   08-10-04 12:12

Marie:

Understanding decibels has also never been something to which I can equate. I was not allowed a teacher�s certificate with Royal Toronto Conservatory as I was too young at age 11.

I was born with all my senses on high. For me, this can be either an exceptional gift, or a VERY real bummer. It has never been easy trying to blend into the rest of society. As a child to teenager, it was a never ending struggle, with all authorities (medical, teaching, whatever) accusing me of not being �normal� � but I, to myself, was certainly normal !

Yes � as I have been diagnosed with severe Hyperacusis, listening to the hum of a hard drive can have me nauseous and with excruciating headaches � if I have not got my senses tamped down. For me it is a constant job � day and night � to try and keep my senses �down�, and I usually overdo it somewhere along the line � but that�s life, for I want to live it as fully as I can.

Over time, as my senses � became even more extreme � and as I wanted to live as �normal� a life as possible � I completed a terrific amount of net search � and then sought a great deal of professional advice. Because all my senses were on high alert, and as I was born this way, proper hearing protection was approved for me. This quite provided me my sanity.

I still have not read that a professional has declared � in writing � that you have severe Hyperacusis. You will need this, together with the statistics of what are your limitations, of which I do not mean decibles. The Province of B.C. is aware of Hyperacusis. TRT is obtainable and also specific ear plugs are also offered for ear protection, so that one can definitely live and work within regular society. Albeit, if one�s ears are desperate for protection, it might take a few short weeks of protection before one could participate.

I wanted to learn how to retrain my brain � and as the specialists were concerned re TRT (even tho one of my specialists helped created TRT), I did it on my own, and now must do it regularly, and probably for the rest of my life � re sounds � all sounds. The operative word here is that I �wanted� to � re constant ear protection if necessary and retraining my brain. I made a choice.

With your travelling, I was talking about the tension with packing, that comes with severe Hyperacusis � the absolute pain that is received with ripping paper and tapes for packing up and whatnot � the sounds in a train station itself, much less travelling to the train station. Also travelling on the train, for there are various psychological pressures which can acerbate severe Hyperacusis and the train itself is full of sound.

With a diagnoses if severe Hyperacusis, one realizes that the use of telephones, until the ears are somewhat �fixed� up or protection is used - are quite nada. The sound waves that others do not hear, can be devastating to me, if I have not been tamping down my sound. I have often explained 'tamping down' on the board, as in comparison to how one counts their daily caloric intake � whereas I �try� and count my daily sound intake. It takes a great deal of planning, but it works.

Maria - I personally feel that my concerns/problems are most definitely not others� � and that I have no validation to assume that I should make everyone else�s life change, simply to adapt to my personal needs. I find that abhorrent. Therefore, I decided to change myself, as best I could.

Whatever you may know what happens in one Province or one governing body within one province � does not make it a solid covering for the entirety of Canada.

I wish you luck in your search for your needs.

 

 

 

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Author: Maria
Date:   08-10-04 16:35

Liam,

I don't mean to be rude or argumentative, however I really am not interested in a P> contest about who has the "worse" hyperacusis. I think this would be hell for anyone regardless of symptoms. It's not a competition.

I am sorry that you have hyperacusis. I am sorry we "all" have it. But frankly, I don't need to "prove" my diagnosis to you by showing you my medical records.. You know?

Have a nice day.. I appreciate your kind thoughts.

Regards,

Anne

p.s.: I have letters (and attachments, test results, etc) from 3 different doctors as well as a Revenue Canada Disability Deduction as off this year (because I finally applied for it). Not that it is your affair, as you say. I have also had disability insurance approved by certain banks.

You know.. I spend alot of times in vet groups and I know my language is prone to getting a little "Marine" at times.. So I'll try and not do that..
You want to see my DD214.. Show me yours.

Anne


You infer that one should just tough it out.. "BE A MAN" Well, sir, I have been fighting "it" for 15 years with no support at from anyone including my family. I know

 

 

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Author: Liam
Date:   08-10-04 17:40

Maria:

There never was a contest with me, as to whomever is worse.
I do apologize for this misunderstanding.

I was explaining to you that there definitely are others out there, who are born with their hearing senses highly acute (severe Hyperacusis) � and others born with ALL senses highly acute � and to grab on to that fact and have a little faith. Just tiny bits and pieces of faith and strength ... do build up.

I look at it this way � in that I say to myself, �Hmmm � they made it, well then so can I.".

I have agreed with you, as all others on this board, that having severe Hyperacusis is not a nice thing. And I made it clear that there are specialists out there, and especially in B.C. who can help. In this you are exceptionally fortunate, for Hyperacusis plus specialists in the field are not forth coming across Canada.

And - what I said was that you will have to prove your inability to the �authorities� (not me) - - and I expressed this clearly � for I experienced this in my own life, as to how the authorities will react. I also said that you personally, have a choice.

In clarification - I am most definitely female, and I, plus the mainstay on this board receive little to no support in our lives. It can be quite hellish at times.

Don�t worry � I speak four languages other than English, so I can manage quite nicely.

 

 

 

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Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #7 

Author:Maria
Date:   08-10-04 23:26

Exactly.

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Author: Maria
Date:   08-10-04 23:37

Look, right now.. this even dealing with hyperacusis - because of my contact with combat vets - which is.. significant over the last 10 years on both sides of the border.. if you want to talk about getting up and being self-sufficient, all of that..

What's difficult for me is that: 1) I have acquired - or been tipped into - agoraphobia, characteristics of a borderline personallity disorder - namely, after a point, I "will" see you in terms of black and white. There will be no gray.

Funtionally.. and this is psych stuff - not hyperacusis - I am at a 4 or 5 - I'm "not" functioning.. and I lay this at HRDC's door.

So I don't condescending pejorative tonalities, thank you very much (and this may very well be a reactive comment).

Please understand.. "I" feel like I'm whining.. because as far as I'm concerned.. if you haven't been in combat??? it's "ALL" a whine. and I am trying very hard to put that aside because I "NEED" to look after myself right now or will not be any good for them, or me. And "they" and those serve are the people that matter.l

I do not need to be trivialized by anyone.. I do that well enough to myself.. I'm just trying "not to". You have not helped.

I can't see where we have anything further.

Anne
webmistress:
http://www.glanmore.org

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Author: Janice
Date:   08-11-04 00:13

Maria, I completely understand.

Janice.

 

 

 

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Author: Liam
Date:   08-11-04 11:05

And so do I.
There are many other issues here.
Good luck Maria.

 

 

 

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Author: Janice
Date:   08-11-04 14:18

End of thread!

 

 

 

 

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Author: Elaine
Date:   08-05-04 16:43

I came across this humorous news article today about noise and it gave me chuckle so I thought I would share it with all of you in the hope that it adds a little levity to your day.

Cheers!
Elaine
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WOMAN CALLS POLICE ABOUT HER OWN NOISE

MULHEIM, Germany, Aug. 5 (UPI) -- Police in Mulheim, Germany, who responded quickly to a grandmother's complaint about loud music discovered it was the woman's own radio blasting.

Elsie Weiss, 71, called police Tuesday evening, complaining she couldn't sleep for the din from a neighbor's radio, and explained she was frail with age and needed her sleep, The Sun reported.

In a quick trip out to her back garden, police found the woman's radio with the volume turned up high.

Word spread quickly through the town.

"She always plays her music really loud," said one neighbor. "For once, she gave herself a taste of her own medicine."

Copyright 2004 by United Press International.

 

 

 

 

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Author: Lynn McLaren
Date:   08-05-04 17:19

Hi Elaine,

I liked that one . That was a classic !

She was complaining about her own noise. Thats rare. Its like being woke up by a barking dog and phoneing the police on your neighbor to find out your complaining about your own dog barking.

I bet the neighbors just loved that one. I wonder if she ever turned her music down after that. Maybe she needs hearing aid's. Maybe she's part deaf and part senile That was a funny story thou. You don't hear many like that.

Thank You Elaine
Lynn

 

 

 

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Author: Anthony C. 
Date:   08-06-04 03:13

Hi Elaine,

That was a great story. It had me laughing.

Anthony C.

 

 

 

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Author: Mark
Date:   08-06-04 11:38

Hilarious. A good commentary on human nature. We all should look into an evaluation of ourselves from time to time. The world probably would be a lot more courteous, and quieter.

 

 

 

 

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Author: Wayne

Date:   06-23-04 22:36

hi, ive been looking around on the internet for an answer to my hearing problems. The problems i have are:

Hearing loss (i have hearing aids), tinnitus, sensory to loud & high pitched sounds, and popping of the ears (no pattern of when this happens, but happens a few times a day). I also get dizzy easily, and sometimes when im lying down and get up, i can walk around for a few seconds and suddenly i feel incredibly dizzy and unless theres support around, i fall to the ground and I remain dizzy for up to 20 seconds. Also, when ive done lost of excersize and im out of breath, my ears go weird and pop in a strange way. After they pop i have incredible difficulties hearing normal sounds, and my breathing & voice becomes a very loud sound to me. Sometimes i suffer very bad tinnitus and i can be left feeling suddenly depressed, i'm not sure why but it gets me down.

So, theres not that much wrong, is there? I dont suffer from the worst hearing problems but its a real pain in the backside (or ears). Could anyone please make a suggestion to what I'm suffering from? I'm not asking for a cure or anything, i would just like to know what is causing all this. Thanks in advance,

Wayne

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Author:glen
Date:   06-23-04 23:06

Hi Wayne...

Thought I would try an comment on some of your issues...

First off, I think an ENT would be your best resource for these Q's and my comments just come from my experiences.

Everyone has so many differing symptoms that it is difficult to really put anyone in any certain category. I can say that the middle ear and inner ear problems cause all of the issues you brought up. I have had light headedness but never the falling down vertigo. I know that vertigo and other ear problems are very characteristic of Meniere's Disease... but I want to say that that disease is difficult to diagnose and would have to be the opinion of several MDs.

So, there is a website that talks about alot of balance and inner ear problems that may be worth the visit: meniere's. org and it has more links to give more info and also has a good chat room that I have visited.

Hope you find some answers

GLEN

 

 

 

 

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__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #8 

Author:Wayne
Date:   06-23-04 23:24

OK, I'll take a look at that website, cheers for the help mate,

Wayne

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Author: Fiona Lamb
Date:   06-24-04 13:26

Wayne,

The fact you can hear your breathing and voice loudly suggests strongly to me you have patulous eustachian tube dysfunction (PET). I had this for four unbearable years. The popping sensations are also PET.

The dizzyness however I do not know. Have you seen an ENT yet?

Good luck!
Fiona

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Author: Wayne
Date:   06-24-04 18:30

Hi Fiona,

I haven't seen an ENT yet, to be honest - I don't know what ENT stands for lol. I'm 16, and I've only mentioned the symptoms to my doctor, but he said it's likely to be temporary. I will take a look at PET, thanks

Wayne

 

 

 

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Author: Wayne
Date:   06-24-04 18:36

Sorry, are there any good websites which offer information on patulous eustachian tube dysfunction? Ive tried looking but cannot find any. Thanks,

Wayne

 

 

 

 

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Author: Rob
Date:   06-25-04 22:04

Hi Wayne,

Firstly, ENT stands for "Ear, Nose and Throat" - specialist.

I agree with Fiona that you may have PET. If so, this may be affecting your inner ear, and this may then cause the balance problems. Always best to get yourself checked out by an ENT, then take it from there.

The tinnitus you mentioned, is it always there or does it come and go? If the latter, is there a correlation between the tinnitus and the other symptoms you mentioned?

Take care.

Rob

 

 

 

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Author: Wayne
Date:   06-26-04 11:21

Hi Rob,

Ok, I have been to see a doctor in a hearing clinic, if that counts. I'll ask my audiologist where the nearest ENT is, the next time i go to see him, in a couple of months.

And the tinnitus, it comes and goes. Usually i get it a few times a day, it's not a serious problem as I've been getting it for as long as I can remember, but I suppose I have a useless memory lol. It usually starts when I hear a sound too loud, when there's very high pitched sound, when im under pressure or when I think about it.

For example, everytime I have my ears tested it kicks in. When my audiologist puts the headphones on and plays the high pitched sounds, then my tinnitus kicks in, and because the tinnitus is high pitched, and louder than the sounds I'm hearing, it makes it harder to hear the sounds. And I just finished my GCSE exams, throughout some of the exams my tinnitus kicked in and was a right pin when i was trying to concentrate. It also kicked in during one of my listening exams, so ya can imagine that was annoying! Cheers,

Wayne

 

 

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Author: Janice
Date:   06-26-04 16:19

Do you have a White Noise Machine??

You can purchase one from Zellers' for $35.00 and just plug it in like a radio, and it would probably help.

It's helped me significantly.

 

 

-------------------------------------------------------------------------


__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #9 

Author: Wayne
Date:   06-26-04 16:44

Hi,

I've never seen one, I live in the UK, so do they have them here? Thanks,

Wayne

 

 

 

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Author: Janice
Date:   06-27-04 17:24

Of course they have them in the UK. I got mine at Zellers. It's by the company ObusForme, I leant my machine and the box to a neighbor who bird's from her house nextdoor drive her up the wall, even her grandchildren don't like staying there.

Anyplace that has therapy products has ObusForme products, the white noise machine with rainfall, songbird, thunder, waterfall, heartbeat noises, etc you just plug in, use it as a radio - don't require headsets.
I'am sure you'd find it but the ObusForme website probably has a toll-free information number where you can purchase their products.

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Author: Janice
Date:   06-27-04 17:27

I just visited their site, and you could contact this email, unless you'd find it in basic stores.

EZL MARKETING
UNIT 23A NORTH TYNE LND.EST.
NEWCASTLE UPON TYNE NE 12 9S2
Phone : 011441912668887
Email : admin@ezl.co.uk

 

 

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Author: Wayne
Date:   06-27-04 21:34

Hi,

Thanks for the help, Janice. I have contacted the email and am awaiting a reply. I enjoy listening to wildlife sounds anyway, so having one would be nice Thanks,

Wayne

 

 

 

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Author:  Janice
Date:   07-03-04 15:21

Wayne, let me know how it works for you.
Janice.

 

 

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Author: Lynn McLaren
Date:   07-03-04 16:39

Hi,

Been reading all the posts above. My tinnitus was not heard this morning. Then my Daughter " my softer voice one " got excited and did a high pitched kind of talking yell.

And as it went up in volume I felt a point in my ear when the sound turned loud and echo like. But not an echo effect like I use to have on just sound in general. As even if it was low in volume. And after a hour or so I noticed my left ear " when I felt it the most " is doing a tweety bird tinnitus. Only in that ear.

I can't prove it but I think it was a delayed effect from that yell. Not from the start of the yell. But the end of the yell " as it went up in volume. I'm just ignoreing the tinnitus effect and I'm sure it will go away as it came. Its happened before " lots of times ".

And thou I avoid yell's when I can " I get them anyway " because I'm joining back in life. Not sitting in my room all the time anymore. But I join the family. But even thou this happens " I prefere to have a life". The tweety bird effect is not as bad as being alone. Some things are worse.

But I was thinking about what Wayne said: on hearing a sound that is loud and high pitched. Our ears must not be able to handle loud high pitched sounds well. There must be a lack or something in the high pitched hair cell department.

Or sensitive frequency nerve ending's . It feels like it hit a nerve " when that happens ". Like I can take so much sound but that pitch " can't take that " so it reacts. It gets irritated and its like a bell that's been rung that can't stop and calm itself down. Its still vibrating from the sound.


Except for me it does not allways seem to happen right away. After the sound. There can be this delayed effect. With a time gap. So the bell has stopped ringing. It just starts up " on its own " in a hour to a few hours? Wonder how that happens ? Whats going on in the meantime ?


I wonder sometimes how I can seperate the tinnitus from the hyperacusis. What cause this symptom. Is it caused by my hyperacusis or by my tinnitus. I have seen alot of symptoms get better as my hyperacusis gets better but is this seperate from.......

I would have had this symptom even if I not have hyperacusis. I kind of think its a tinnitus thing. Not sure if its because I can't handle the sound that is made loud by my hperacusis. I just have theses lingering effects. If I just had tinnitus with no measurable hearing loss " would this effect still happen to me "?


If so and the hyperacusis went away. I guess it would just be something I would have to live with knowing its not going to make me go deaf with ever reaction " I get " from a sound that hits that pitch. It's just is a sensitive area. O.K better then Hyperacusis. For me its better.

Take Care Everbody 

Lynn

 

 

 

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Author: Jeanne
Date:   07-08-04 09:04

E=Ear N=Nose T=Throat Doctor

 

 

 

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Author: Jeanne 
Date:   07-08-04 09:16

You need to get tested because it could also be tumors.

I have invertigo occasionally. In July 7, 1999 I had my first episode. I was a "real dizzy blonde"! I felt like I just got off the merry go round. It makes me sick just thinking of it. That first year I was sick all the time. I have had lots of tests and I was only told about invertigo. I had one ENT doctor tell me it was small pieces of bones bouncing around and throwing off my balance.

I noticed when I drink alchol and eat salty foods it will trigger a dizzy spell from a deep sleep.

I was prescribed Meclizne and it helps if I take it before I get too dizzy. I have had tubes in my ears, adnoids removed twice. I have ringing in my ears and lost all my high frequency sounds.

I had my last episode July 7, 2002. Knock on wood!

 

 

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AuthorC

Date:   08-05-04 23:23

Has it ever been suggested that you have Meniere's Disease? A great web site and forum to check out is: http://www.menieres.org/forum/index.php
try it and see if there's any answers for you there.
good luck!
PC

 

 

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-------------------------------------------------------------------------


__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #10 

Author: Dan Malcore
Date:   08-05-04 21:35

Dr. Jastreboff has recently updated the list of hearing professionals around the world who have kept current with his protocol and administer hyperacusis (tinnitus) retraining therapy. To view this list, visit this website:
http://www.tinnitus-pjj.com/referral.html

 

 

 

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Author: Stephen Nagler 
Date:   08-08-04 01:57

FWIW ...

From Dr. Jastreboff's website:

"The list is based on the statements of members and is not further verified. Consequently, it is not equivalent to certification and should not be treated as a referral list. We are not taking any responsibility for quality of services and the adherence to the original TRT protocol by the individual members."

stephen nagler
(concerned about the lack of credentialing and standardization in TRT)

 

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Author: Marsha Johnson , M.S
Date:   08-08-04 14:16

That is so. Also, my info is still incorrect on that site..........wah wah wah

MJ

 

 

 

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Author: Jamie
Date:   08-08-04 15:25

Why would they call the page "referral.htm" and they say not to use it as a Referral guide?

Interesting...

 

 

 

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Author: Lynn McLaren
Date:   08-08-04 18:33

Hi Dan, Stephen, Marsha, Jamie,

Need to take a look at that list. Still haven't decided if I want TRT or not. I am also concerned about the lack of credentialing and standardization thing.

But I am getting better and my neighbor was useing a staple gun. And evn thou I was on the other side of the yard " its starting to sound like a staple gun again ". Something loud that I would not use without earplugs or protection .

But, the sound sounded normal. Not like it use to sound when it was so loud and abnormal. It sounds like the decibles in my hearing is cut in half. The volume control came down.

Now I kind of know what other people where hearing and thinking when I was running from sounds. They couldn't understand how I could run from a sound that was not really that bad or loud.

They could not hear that it was loud. To them it was like I was running from a bee buzzing . They all were just looking at me with wonder.

It reminded me of this movie I saw on T.V. about a guy who lived in an apartment and aluminum foiled the walls " to protect himself " and had all theses imaginary visons of sounds and people who where attacking him.

And this girl that was there with him witness this behavior but could not see anyone in the room attacking him. And it was so real because it showed his visons in the movie.

And you could see him moveing around fighting people who where there and then not there. But watching the movie they showed what he saw as real " so you could expirence it " then they showed him fighting with air.

I forgot the name of this movie . Retro man or something. It was a strange movie and I saw it years ago before my hyperacusis. But my goodness " what we must look like to others.

Its like liveing that movie without the aluminum foil. I wonder if aluminum foil keeps sound out. That movie was so long ago I forgot what he used that aluminum foil for but my goodness.... its likeing trying to explain hyperacusis to somebody.

I keep thinking while I watched that movie how bazzar. Thats terrible. I would hate to have that happen to me. And here I am........ Kind
of looking like that guy.......

But I used my shaver yesterday and it wasen't that loud. My husbands is louder but now that I'm starting to hear sound's kind of normal like again. I am amazed how a sound thats not really that bad now and does not bother me that much " sounded so damageing and loud " to my ears.

I hear certain sounds now and think " thats not loud at all ". Its wierd how I could not handle that sound before. It doesn't sound the same as before.

I use to open my front door and then practically slam it closed because of the roaring sound out there from traffic blocks away. Plug my ears up just to tinkle and flush the potty or use the hose to water the yard.

I use to walk around the house quietly closeing doors so I did not hear the click of a lock . I have thoses child proof doorhandle covers and boy if you don't turn the knob all the way around " click " when it hits the jam. That use to put me in a panic and practically bring me to tears with " how could I have been so careless ".

It felt loud enough to damage and hurt my ears. But I guess it didn't because all the times I"ve messed up and others have closed the door to hard or turned the water on in the sink on high. Plus not shut that bathroom door after a flush " I'm still doing better. And it happened alot.

If anything it was the overuse of earplugs that messed me up. I'm hopeing in the future that TRT will be a more learned thing. That more providers will be around and it will be something incorperated in the mainstream of things. Especial if your in the hearing field.

No body needs to go thru what I had to go thru. There was no need for it. Ear doctors need to get educated on this disorder so at least they can give out good advice to help their patients with it.

It would have saved me tons of misery. But I'm not healed yet just working on being the best I can be for a person with hyperacusis.

Takc care you all
Lynn

 

 

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Author: Dan Malcore
Date:   08-09-04 02:13

Stephen and Marsha

I share your concerns. However, monitoring ENT's and audiologists would be a difficult task. In fact, how much are doctors are monitored for procedures they learn in medical school?

The greater good is that there is a treatment available that helps us and there are people (doctors and audiologists) out there that have paid money and taken time out of their schedule to learn this procedure. No doubt some will be better at it than others.

My big concerns lie with the ATA paying Dr. Richard Tyler $93,000 to evaluate the effectiveness of TRT. He went into the study with his own agenda and had little to offer at the conclusion. This was no surprise for me. In the middle of the study he wrote an article for The Hearing Journal boasting how he could improve TRT, he denounced TRT in Washington DC in front of a commission after my presentation where I pleaded with the Social Security Administration to consider severe hyperacusis as a disability so patients could be compensated to receive proper treatment and last year saw a patient with severe hyperacusis never even mentioning TRT as a tool to improving her tolerances to sound. What a waste of money. This is a area that raises the hair on the back of my neck. Now the ATA just fed him another $102,580 grant to test the effectiveness of music on tinnitus.

 

 

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Author: Stephen Nagler 
Date:   08-09-04 04:00

Dan posted [in part]:

"I share your concerns. However, monitoring ENT's and audiologists would be a difficult task. In fact, how much are doctors are monitored for procedures they learn in medical school?"

..............

To my way of looking at it, credentialing is different from monitoring for procedures learned in medical school. And even as far as procedures learned in medical school go, an intern or resident doesn't just read about a procedure and go out and do it without at least being observed a few times by somebody more experienced!

Credentialing in TRT should be analogous to licensed board-certified surgeon getting privileges to do stereotactic needle breast biopsies or laparoscopic colon resections at a local hospital. Here we have two examples of relatively new procedures developed after the surgeon completed his or her formal training period. The surgeon who desires to offer these procedures to his or her patients takes a course and then undergoes a period of observation by somebody on staff who has already developed expertise in that given area. The more experienced surgeon then "signs off" - indicating that whatever standard that has been established has been met. That is how credentialing works in the real world. And in TRT there isn't anything even close! You simply put your bottom in a chair for a three day course, try to stay awake, and then call yourself a TRT clinician. If you want to get on "the list" referred to earlier in this thread, then you wait six months after getting up out of that chair before being put on the list. That's it! Try to stay awake ... and get on the list. In fact, some people (not on the list) call themselves "TRT clinicians" without even taking a course! The search for high quality TRT is truly an example of caveat emptor. And it's totally unnecessary.

As a former TRT clinician, I can tell you that there's a whole lot of "bad" TRT (some of which isn't TRT at all) being practiced - I am sure that Marsha will agree. I can also tell you that there is some really high quality TRT around. But without some credentialing mechanism in place, how is a prospective patient to judge?

Now, about Dr. Tyler's grants. I am no longer on the Board of Directors of the American Tinnitus Association, but ATA takes its fiscal responsibility to its donors very seriously. The process isn't perfect, but it is very very thorough. Before grants are given out, formal proposals are reviewed by a dozen or more top men and women in the field. Many more are rejected than accepted. And Dr. Tylers proposals were outstanding. I have a great deal of admiration and respect for you, Dan. I think you know that. But without your reading Dr. Tyler's proposals and participating in the extremely extensive and intensive discussion/dissection/evaluation/recommendation process, I think it may be a bit unfair to issue such a harsh public criticism - at least not without adding in something about the fact that you (justifiably, in my opinion) have a personal ax to grind with Dr. Tyler.

Best to all!

smn

 

 

 

 

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Author: Dan Malcore
Date:   08-09-04 13:29

Dear Stephen

I stand by my remarks about Dr. Tyler and my issues with him are for the reasons I stated (nothing more, nothing less). And you're right - they are justifiable!

As far as TRT clinicians being monitored, we are on the same page but I cannot see any changes taking place. As costly as TRT is for the patient, I wish there were ways for the patient to determine who the high quality clinicians were. Any suggestions?

Thank you for participating in this thread...

Dan

 

 

 

 

-------------------------------------------------------------------------


__________________
Take Care

Lynn
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #11 

Author: Lynn McLaren

Date:   08-09-04 13:30

Hi Everyone,

I was reading the dialogue above and now I'm wondering " is Dr Tylers opinions going to help us or hurt us ?".

And how is he proposeing on improveing TRT ? And why could they not have paid Marsha Johnson or you Dr Nagler or even Dr Jastreboff to do this study ?

At least you all have expirence with TRT and know what your doing. I would trust a study of TRT done by you practitioners with more expirence and compassion for us hyperacusis sufferes.

How can anybody who goes before Washington D.C. and denounce TRT in front of a commission have any compassion for us at all? I question this doctors motives myself upon hearing this myself....

This upsets me as I faithfully renew my membership with ATA and donate to there research and buy their products.

Tell me this is not true Dr Nagler . Tell me this is not true Marsha.

Do you know hard it is for me and others to get help as it is from the medical community.

I want to read Dr Taylors proposal results myself. Will it come out in the next tinnitus newsletter for all to see?

I want to know how he is going to improve TRT to help others. Let me be the judge of how much compassion he really has to help people that suffer with this condition.

Has anyone else here read his findings and proposal's ?

I want to know what this Dr Taylor is going to do that effects my life and all thoses out there that need the help of TRT.

I'm very sadden if this is the way it is. How can I have any faith in a medical system that does this to me and others ?

Please explain this to me and tell me this is not true.

Thank You
Lynn

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Author: Stephen Nagler 
Date:   08-09-04 14:04

Lynn, in my opinion Dr. Tyler's tinnitus research is very valuable.

Dan, I do believe that your personal issues with Dr. Tyler are justifiable - extremely so. But that is a whole different matter from whether or not ATA should fund two of his grants.

And as far as credentialing goes, unless and until Dr. Jastreboff decides that credentialing in TRT is a priority for him, there will be no way for prospective patients to judge who is qualified and who is not. That's no 100% guarantee of quality, of course, but it would go a long way.

Best to all -

smn

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Author: Dan Malcore
Date:   08-09-04 14:08

Stephen
Can you suggest a tool, or series of questions, a patient can ask to determine (for themselves) when calling on the telephone, whether the clinician on the other end of the phone 'seems' qualified? I understand this would be your opinion, but your opinion I consider valuable.
Dan

 

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Author: Stephen Nagler 
Date:   08-09-04 15:17

First thing, I guess, would be how quickly your call is returned. That's an often-overlooked factor, but one that is important. If it takes more than a day or two, look elsewhere. Also, if your questions are answered by a secretary - but you cannot actually speak with the clinician unless you are a patient -- again, look elsewhere.

Ask about the clinician's experience with hyperacusis. How many individuals with hyperacusis has the clinician treated? What treatment options are offered? What is the success rate? And how does the clinician define success? (That last one is often overlooked.)

Then, ask about education and other training. If the individual says he or she does TRT, ask if he or she has taken Dr. Jastreboff's course and how many patients he or she has treated with TRT.

Finally, see if you get a "gut" feeling that you and the clinician will "click." If you do not get a feeling of comfort, confidence, and compassion - that's not a real good sign.

Hope this helps.

smn

 

 

 

 

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Author: Lynn McLaren
Date:   08-09-04 16:06

Hi Dr Nagler,

You said Doctor Tyler's Tinnitus Research is very important. But is that all he is looking at when it comes to the effectiveness of TRT. Is hyperacusis included at all in his TRT research?

I believe that TRT is probably more effective for hyperacusis in regaining loudness tolerance then TRT is for tinnitus in the short run.

Sound therapy for hyperacusis is about all we have to go on for help. In hyperacusis we are building up our tolerances. In tinnitus we are teaching the brain to tune out the noise.

I see it as used for different reason's in both conditions. So it would be hard to compare the effectiveness of TRT unless you put it in two different catagorys. Is Dr Tyler doing this or is hyperacusis not even in his research at all ?

Did he comment on the effectiveness for hyperacusis or tinnitus with TRT to the commision in Washington DC ?

Even thou this is two sides of the coin of a disorder I do see two different proticals for this research into both disorders.

So is hyperacusis even on the map for DR Tyler ?

I have both tinnitus and hyperacusis so I am concerned about research on both subjects.

TRT has helped many people with tinnitus and hyperacusis so I am confused why DR Tyler would denounce TRT.

Am I missing something ?


And Dr Nagler, as a TRT specialist yourself what are the chances of a persons hyperacusis just improveing or clearing up itself without TRT. Just sound therapy.

Is that what Dr Tyler is looking into also? Or not. For tinnitus or not .

Thank You for your time
Lynn

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Author: Stephen Nagler 
Date:   08-09-04 17:48

Lynn posted [in part]:

" You said Doctor Tyler's Tinnitus Research is very important. But is that all he is looking at when it comes to the effectiveness of TRT. Is hyperacusis included at all in his TRT research?"

...

Lynn, you asked a lot of (very good) questions. Let me just touch on a few issues.

Dr. Richard Tyler is one of the foremost tinnitus researchers in the world. His work is very highly regarded almost universally. That doesn't mean he isn't human. It doesn't mean he doesn't err. And it certainly doesn't say anything about his diplomacy and tact - or (at times) the lack thereof. It just means that the tinnitus world is a WHOLE lot better off with him and his work than had he devoted his considerable talent and drive into - say - business or law. Dr. Tyler and I disagree more than we agree - but that does not mean I cannot respect his work. I do. As Dan alluded above, Dr. Tyler is in the "anti-TRT" camp. Possibly that's one of the reasons his TRT project was funded by ATA - if TRT were to be found effective for tinnitus treatment in his well-controlled study, nobody could say it was because of "favorable" investigator bias!

Now, specifically with respect to hyperacusis, it was not an issue of particular interest to Dr. Tyler the last time we spoke about it - a few years ago. He's allowed, you know! It doesn't make him Hitler reincarnated.

................


"And Dr Nagler, as a TRT specialist yourself what are the chances of a persons hyperacusis just improveing or clearing up itself without TRT. Just sound therapy."

...

Please - I am not a TRT specialist. Never was. I treated tinnitus and hyperacusis patients with a variety of methods, trying to tailor the choice of approach to each individual's needs. One of the approaches I used was TRT - and I think I became quite adept at it. But not to the exclusion of other methods.

As I see it, the thing about TRT that is effective specifically for hyperacusis is indeed the sound therapy ... and ONLY the sound therapy. The directive counseling component of TRT has no role in hyperacusis treatment (in the absence of tinnitus). Actually, I believe that the *proper* use of "pink noise" is likely more effective for hyperacusis than traditional TRT. And, of course, some hyperacusis resolves spontaneously with gradual purposeful exposure to a variety of sounds.

JMHO

smn

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Author: Dan Malcore
Date:   08-09-04 20:45

Stephen

That was very helpful. I respectfully disagree with your assessment of your expertise in TRT. I think you are one of the very best in the whole world and sorely miss your 'direct' involvement in that area. Aside from that, I greatly appreciate your comments and respect your need to move onto other areas of interest which challenge and motivate you. I also appreciate you being open to participants on this bulletin board. It means the world to them and to me.

Dan

 

 

 

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Author: Lynn McLaren
Date:   08-09-04 22:37

Hi Dr Nagler,

That goes for me too. I have read about you and your TRT expertise and your help to your patients and thoses who are not your patients. In my eyes Dr Nagler " you are the expert " and I wish you had done that study.

I believe your heart is in the right place. You are a positive person and us hyperacusis and tinnitus suffers need more people like you around. Not less.

I am very disappointed that the ATA funded Dr Tyler on this delicate subject " even if it was just for tinnitus ".

I do not know him personally but I can only speak from my perspective.

When you are ill and you see someone that is highly educated and respected withholding the treatment you may need to make one whole again " that causes's one to feel great pain.

I have no reason to answer why he would want a study funded just to debunk it and make it harder and that farther of a reach for others who are truely suffering.

But If that is the true cause or the results of " I am truely sadden by this". That hurts so many people. And I know that TRT has helped so many people get better.

To preserve a benefit of the doubt " I hope the results of the whys of this study " comes out in full light in the ATA newsletter.

I am very happy that you come here and take the time to comfort us . And I am so greatfull that Dan gives us a voice".

Without that " we would have none ".

We would feel alone with this condition as things in the world are now.

And the new people that show up on this board " pleading for help " breaks my heart at times. I feel for them.

But the positiveness of people like you Dr Nagler and Marsha Johnson and Dr Vernon and Dr Jastreboff give people a reason to not give up. And that does mean something. To me it does.

And Thank You so much for answering my questions.

I believe also that the proper use of pink noise is very effective in the treatment of hyperacusis. And hearing this from you makes me feel better knowing all that time spent with the pink noise was a good thing.

And also that some hyperacusis resolves spontaneously with gradual purposeful exposer to a variety of sounds.

What you have said is helpfull to me and others reading this board. I respect you and people like you and I feel like you are doing the right thing.

In my beliefs I believe life has a purpose created for a higher purpose to be nurtured and respected for the creation that we are.

For the purpose that we are called to serve and the gifts we have to bear. And throu our compassion we truely grow and know our creator. But thats my beliefs.

Thank You Dr Nagler.

For all the gifts that you have givein to your patients and others over the years.

Take Care Doctor
Lynn

 

 

 

 

 

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Reply with quote  #12 

Author: Lynn McLaren
Date:   08-10-04 14:53

Hi Dr Nagler,

I have been thinking this over and you said the directive counseling component of TRT has no role in hyperacusis treatment in the absence of tinnitus. I'm not sure exactly what you mean.

Are you are saying that a hyperacusis person going to have TRT just for hyperacusis needs no emotional counseling to be able to stick with the treatment ? There is no emotional componet involved.

As I have read on this board and from others who have undergone TRT that the counseling is important as the fear of sound is so great.

Even to put that low pink noise sound in ones ears is almost impossible to do and follow thru for lots of hyperacusis sufferes.

So they do not complete the treatment and drop out of therapy. Hyperacusis suffers believe that putting that sound in there ears is damaging to them. No matter how low of a volume it is.

I have subjected myself to pink noise " not with headphones " and I know that is not true. I was afraid of the sound hurting me at first myself " but stuck with it " anyway.

Its just a fear of the sound destroying your auditory system and makeing you worse. Its a real fear and hard to overcome.

I had no direct counseling then but it took alot to muster up the courage to go thru this process. And thats not putting the sound in my ear canals. Not all people can do this without help.

In a way I did have some late in the game directive counseling by phone from DR Vernon to help see me thru the big steps.

And that was so important to have. He helped me tremendously.

I think Marsha Johnson and Dr Jastreboff believe that directive counseling is important for hyperacusis people also. But I can't speak for them.

I think the counseling with TRT for hyperacusis and tinnitus suffers would be a different form of counseling. There may be a fear on both parts to put the sound in their ears " but maybe for different reasons"

One because the fear it may make their tinnitus worse. And for the other that it may make there hyperacusis worse and damage their ears.

And plus both need to now the reasons whey they are going thru this therapy in the first. What it is suppose to do for them.

Plus one need's to build up sound tolerance with the use. The other needs to overcome the sounds in their ears " head ".

But I think its an important part of the therapy for both because of emotional reason's " they both have " regarding this therapy.

So they can overcome their fears and concern's and stick with the protical of the reason behind the therapy " to make it work " for them.

Is that not important. Even thou a high rate of hyperacusis suffers have tinnitus. For the ones that don't have tinnitus.

Maybe I do not understand the whole procedure behind directive counseling. Any thoughts on this ?

Thank You So Much

Lynn

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Author: Stephen Nagler 
Date:   08-10-04 15:21

Lynn posted [in part]:

"Are you are saying that a hyperacusis person going to have TRT just for hyperacusis needs no emotional counseling to be able to stick with the treatment ? There is no emotional componet involved. "

...

I'm not saying that at all!

The need for emotional support, psychological counseling, etc. in hyperacusis is individualized. In my opinion it is very valuable in many cases - even essential in some.

But **DIRECTIVE COUNSELING** as the term is used in TRT has nothing to do with emotional or psychological support. It is an educational tool used to explain the neurophysiological basis of tinnitus. In my opinion the term "directive counseling" is an unfortunate choice - but I didn't pick it! :-)

Hope this helps.

smn

 

 

 

 

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Author: Don 
Date:   08-10-04 16:16



Dear Lynn:

You wrote "Hyperacusis sufferers believe that putting sound in their ears is damaging to them."

Are you saying that for all people with hyperacusis that this is only a belief, not a reality?

Regards

Don

 

 

 

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Author: Lynn McLaren
Date:   08-10-04 23:07

Hi Dr Nagler,

Thank You for responding to my question. I 'm glad you see the emotional need as valuable or essential in some. After reading the board over the past year I see the emotional factor playing a part in this disorder alot. The fear is so real and so hard to get past.

It takes over your life and the fear becames a part of the hyperacusis disorder. Its in the way of getting better.

But now I understand what directive counseling means. In a way it is a poor choice of words. It sounds like something else like intensive therapy.

But an educational tool to explain the neurophysiological basis of tinnutus would help a person understand whats going on inside his or hers body. That would help calm a person down enough to understand why they are doing what they are doing.

To keep a person on track of completeing their therapy. But they also need to explain the neurophysiological basis of hyperacusis. What is going on in the auditory system and brain and why this sound therapy works.

I think the more hyperacusis people that understand more about their disorder and what is going on inside their auditory system with treatment would only help them understand why they must do the sound therapy.

Its important for the hyperacusis suffer to feel in control of his or her condition. Its a control issue and its very important.


But you probably can get that information allso from a good book. Or a pamplet . But some hyperacusis people need someone to walk them thru the steps and help them get thru this. Thoses I guess would need TRT or some intensive therapy.

Thank You Dr Nagler
I understand it better now
Lynn

---------------------------------------------------------------------------------------------
Hi Don,

I think that if a hyperacusis person does TRT and I hear it is of such a low volume in Dbs " I don't believe it will damage there ears " at all. It may feel like it at the time. But I don't believe it is actually doing it.

I believe there is more damage from the fear then the sound. Now if you did AIT therapy. I hope I wrote that correct. It's the sound treatment they do for autistic children.

I believe that may damage your ears because of the high DB's involved.

It is not good to stick any device " stereo headphones "included. Anything thats over 80- 85 Db's in your ears. I believe in hearing loss.

TRT I hear does not go up that high. I think its probably in the 50's or 60's. I read that somewhere on the board a long time back. But I don't think they turn it up much louder then that.

But I have done pink noise for about a year and I did not have hearing loss caused by it. In fact instead " I've got better from it ". Its the opposite.

I don't turn it up that loud. My T.V is on a louder volume then I turn up my pink noise. Even I listen to music louder then that.

My T.V. and my music would be more of a risk to me" I believe" then the pink noise.

I think other things would cause more of a risk in life to someones ears then TRT or pink noise. Lots of people have got better from the treatment of the therapys. I don't believe that It can cause damage .

Otherwise " no one would have improved from it ". They would all have damage from it instead.

Whatever one may try to build up tolerance " they should start out at a low volume " and build up slowly over time. This is the safe way to do it. But causeing hearing loss at such a low volume level. I don't believe so.

You Take Care Don
Lynn

 

 

 

 

 

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Reply with quote  #13 

Author: Marla 
Date:   08-02-04 19:41

Hello again,

MY family member swears that a chiropractor wil cure my tinnitus. I'm not sure about the hyperacusis. But this doctor uses a machilne to correct the bones not his hands. The machine makes noise so I didn't go. I was not too sure he could help anyway. Did anyone every try chiropractic techniques for tinnitus???

 

 

 

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Author: Charley
Date:   08-03-04 17:49

I have never been to a chiropractor, but others in here have. I have seen some chiropractor advertisements with claims of being able to relieve tinnitus. Maybe some others in here can give you more information on this. I'd be interested to learn more about this, too.

 

 

 

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Author: Dan Malcore
Date:   08-03-04 20:50

I had a chiropractor call me and offer to treat me at no charge. He claimed he could eliminate my tinnitus. After several sessions, he gave up.

 

 

 

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Author: Tracy
Date:   08-06-04 20:44

Hi I have been seeing a chiropractor for my tinnitus and hyperacusis, I had some treatments last fall with no luck and have decided to try again, the chiropractor thinks he can help. all i have noticed is the tension in my neck and shoulders is gone the tinnitus and hyperacusis is still there.

 

 

 

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Author: Adrian Lally
Date:   07-30-04 18:30

I have a deviated nasal septum to my right side, in which I also have quite loud tinnitus in my right ear and constant pressure and clicking. My specialist recommended a septoplasty and i'm concerned whether this could worsen or relieve my tinnitus, which is by far the worse symptom. If it gets any worse......i dont like to think what I would do. However I must get rid of the pressure and clicking, is there a safe way?

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Author: Charley
Date:   07-30-04 22:30

Hi Adrian,
I had a septoplasty in July of last year. It really helped my sinuses a lot! My hyperacusis changed somewhat about 6 months later...began having a distorted speaker type sound in my left ear, but that might not have had anything to do with it. As far as relieving tinnitus, it didn't help that problem.....I have tinnitus in both ears. But the surgery was not performed for that problem...it was for my sinuses...also, I could not breathe through one nostril. I had packing/splints in my nose afterward, and this sometimes caused strange sounds in my ears, especially if I coughed, but this was not a problem once the packing/splints were removed. To be honest, the recovery part was not fun, but it was worth it to relieve constant sinusitis and relief in the nostril that was blocked.
I guess it could be a possiblity to relieve some of the pressure and clicking. For me, it did not relieve any of the ear problems. My ENT told me that it probably would make no difference for the ears, but that he would be glad to take credit for it if the problems in the ears ceased. :-)
Anyway, if you have constant sinusitis, or find it hard to breathe through your right nostril, then the septoplasty should correct that.
I hope this helps. By the way, I used to have a lot of upper respiratory infections along with the sinusitis, and since the septoplasty, I have had much fewer bouts with those conditions.
If you decide to have the surgery, let us know if it helps your tinnitus, pressure, and clicking.
Bye for now,
Charley 

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Posts: 7,991
Reply with quote  #14 

List Of All That Have Fullness...

 

Author: Bev
Date:   07-08-03 17:49

I have a list of some of the people that experience fullness in ears. I think it would be very helpful to all of us if we could compare what we feel, anything that has helped relieve fullness feeling, is it only in ears or head also? Anything make it worse?

Bev= fullness in both ears. head feels like it is in vice sometimes. pressure in head, no relief.

Mirjam Vonk =
Mark Young =
Marcus=
rob=
dave camp=
liz=
jamie=
cheryl=
soorez=
shawn=
fiona lamb=
dan=
sue c=
kathy=
laurene=
john=
josh=
j.=
sean=
mark=
please add your name to list.
lori ?
jb?

 

 

 

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Author: 2bears 
Date:   07-08-03 21:37

i have had the fullness in the hear when exposed to a loud noise with out ear protection, i had some medication given to me by a ent that works well.
willing to share the medication if its ok on the board, im asking first as im new to the board, but had H for many yrs.
2bears

 

 

 

 

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Author: Rob
Date:   07-08-03 22:15

Hi Bev

Pleased to announce that I no longer experience ear fullness.

The fullness has abated in the same degree as my h, which is 90% improved over two years. This I believe has been due to learning to relax. The head band has also loosened for the same reason. I wish you all a similar experience.

 

 

 

 

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Author: jb 
Date:   07-08-03 22:34

I have hyperacusis in both ears and have a fullness/emptyness in one ear. It came after the whiplash injury which caused my hyperacusis and tinnitus and has never changed over the ears. I know it sounds strange but it feels full and empty at the same time. I suspect in my case there is some nerve damage or something like that which gives this strange feeling. It could also be decribed as a dead feeling like that particular place is missing something it had before. It is not at all like what I've read that some people have a feeling of fullness from the eustachian tube. It is in the ear, not the head. It did not change as my hyperacusis and tinnitus improved with TRT and does not change due to noise exposure or anything else. It is constant with nothing making it better or worse since it first appeared.

 

 

 

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Author: jb 

Date:   07-08-03 22:36

Was that a Freudian typo or not? I said "has never changed over the ears" and meant "has never changed over the years".

 

 

 

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Author: Aran
Date:   07-09-03 00:01

I had fullness and earache for months after the injury, depending if the muscles around of my neck were very swelled or not. Now, that my neck is much better, I have the pressure when I am exposed to loud sounds. It goes away after few days or weeks depending what cause it. I do not take any medication for that. 

 

 

 

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Author: bev
Date:   07-09-03 14:04

2bears, Would love to know what medication u used to help the fullness. Glad it worked for u.

rob, I have read your helpful post on your improvement with relaxation & your diet. I'm not bad with my diet, it does seem that when I relax I feel the fullness more. even so I am trying to relax.

jb, fullness/emptiness feeling together, I don't know if anyone else has that. I was wondering about if this fullness feeling was a feeling of part deafness. I thought if H & T improved that the fullness would improve as well. sorry to hear yous hasn't, wondering about others.

Aron, Glad your neck is better. no med's. time can heal. I'm to impatient to wait for time. I've lost so much time as it is. It seems I don't have much choice though.

thanks all.

It was weird but after posting this I tryed taking a Claritin D just to see if it would do anything & it did, I couldn't believe it. It's the first time I got some type of relief from the fullness. I wonder what it did.
I have found also that anything for me the is a sedative makes my fullness worse.

anyone else with helpful info?
Comparing each others problems in the long run can help each of us

 

 

 

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Author: Meredith
Date:   07-09-03 15:08

Have you noticed increased fullness/pressure in your ears with the changing barometric pressure in the weather? I think it affects me. I sometimes take an actifed, just half a tablet, and it gives a little relief. A whole tablet makes me sleepy.

 

 

 

 

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Reply with quote  #15 

Author: bev
Date:   07-09-03 16:14

Meredith,
I've had a problem for years now when it rains. I don't even bother getting dressed to go out if I don't have to. It effects my joints, it just does something to me, I'm so weak & tired due to lyme disaease.

I'm not sure if it makes my ears feel more full or not since this is new & my ears have had this fullness feeling for over a month now. I will pay more attention to it.
I'm guessing actifed is for allergies? Is it simular to Claritin D?

Anyone else notice fullness/pressure in ears w/ changing barometric pressure?

 

 

 

 

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Author: Fiona Lamb
Date:   07-09-03 16:24

Bev, I don't seem to have the ear fullness - I can pop my ears all the time if I want to voluntarily. But I do feel as though something is spasming in my ear, contracting if you will. I find it very hard to explain. I am sure it's related to my e-tube, perhaps the nerve attached to it, as when I yawn, talk loudly, sneeze, eat, it goes away and then comes back once I stop doing that activity, i.e., when I am relaxed and not doing anything at all. It's all so bizarre really but I am trying to learn from everyone else and you all are marvellous. I think we need a glossary written up. I am always unsure when you talk about experiencing pain if you mean actual physical pain or emotional pain. I personally do not feel physical pain but I and my ears wince when I hear a loud noise or if my kids scream close by.
Fiona Lamb

 

 

 

 

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Author: Meredith
Date:   07-09-03 17:23

Actifed is similar to Sudafed or other decongestants. It is used for colds or allergies to clear up the sinuses and ears. Good before flying if you have a cold.

My doctor prescribed Dyazide for the pressure in my ears. It is a water reduction pill and is a long term treatment, not a quick fix. It is a frequent prescription for Menieres patients. It may help.

 

 

 

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Author: dave camp 
Date:   07-09-03 17:53

Mereditch, is dyazide considered a "diuretic"? If so, I heard that the side effects are often worse than what they treat such as fullness. I know that our fullness is a horrible sensation. . Did your doctor provide a very mild dose maybe or a new form with less side effects.
As for this whole comment chain, i will study it and see if i can put some analysis into it. Talk to u all soon
-dc

 

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Author: Meredith
Date:   07-09-03 22:44

Dyazide is the generic name, Triameter is what I have. Yes, small dose.

 

 

 

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Author: Mirjiam Vonk
Date:   07-10-03 04:35

My experience of feeling fullness in my ears isn't the feeling of fullness from the eustachian tubes and also I don't have jaw problems.
The powerful hit of hand to my left ear started sensitivity and tinnitus to both ears at once.
My left earcanal felt like being pressed inside like a harmonica/accordion, and my familydoctor saw a pressure spot on the left eardrum for 2 weeks.

When exposed to a for me loud sound, my ears are painful (constant electrocuted eardrums feeling, burning) and tired, heavy.
Like a rock is laying on the eardrums and it also feels like the earcanals are poured full with cement (and this is not from wearing earprotection in ears, but comes from sound), also like I am in between a vice-bench being held only to my two eardrums.

When I bend forward and my head goes down a lot of pressure comes to the left ear and the left side of my head (inside the head snail-shell), like the bloodvessels are full. Crying also makes the ear feel full.
And using my voice to get heard a little also makes my ears full.
The temples of my head often are painful too and having a head ache aggravates both pain and fullness.

Mirjam

 

 

 

 

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Author: Laurene

Date:   07-10-03 06:25

Bev,

I had terrible fullness in my ears when around sound when I first developed hyperacusis. I also had severe burning pain and itching that were debilitating. No meds seemed to help. Relaxation and warm baths did help, as did rest.

But I am glad to report that since starting TRT 4 1/2 weeks ago, the fullness, pressure, pain, and itching have nearly completely disappeared. In my case, I believe the pressure and fullness and related pain were mechanisms of the hyperacusis which appeared when I was around more sound than my ears could handle (which wasn't much at the time).

I have really bad forms of both hyperacusis and tinnitus. They are so bad that in the beginning, I couldn't even turn on the sound devices for the TRT. I was SO scared and discouraged. Now, I'm actually making a bit of progress. I obviously have a ways to go, and I'm not to the finish line yet, but at this point, I highly recommend TRT. It is the best treatment for these conditions. I hope your fullness and pressure improve. I know how hard it is to live with.

God bless,

Laurene

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Author: dave camp 
Date:   07-10-03 20:33

Laurene, your story gives me great hope, someone who has not yet tried TRT but will very soon.
Mirjam, your account of a feeling of blood vessels being full is something which I too experience, though I experience it when my hyperacusis usually gets worse (which is from loud sounds of course). It is either from a reflexive local hypertensive reaction (constriction of the blood vessels) around the ear in response to ear stress or a reflex increase in actuall blood flow to the ear which the brain feels is damaged. Im noot sure which of these two is more accurate).
As for Rob, how did ur H develop again? thanks so much
As for Fionna, what you might be expericnes when u meantion the "spasming symptoms" in your ear is something which I sometimes experience after swimming, ever since I came down with H. That is, your correct, it is related to a muscle that is related to the E-tubes. THe medical term for what you might have is something like "Pattullous ear dysfunction" - my spelling might be a bit off. I suggest you do a web search and see if it correlates more with your symptoms and then you can maybe see if there is treatment for it. Good luck.
By the way - I did not receive my SUmmer Newsletter, but I am wondering, WAS THERE ANY NEW RESEARCH OR MEDICAL INFORMATION REGARDING HYPERACUSIS? Thanks y'all, cant help but be a stickler for scientific truths.
-dc

 

 

 

 

 

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Author: Bev
Date:   07-10-03 21:42

Thanks you all for responding. I was also wondering if the fullness feeling we feel is from after using ear plugs, that somehow us closing our ear with ear plugs, that our ears learned from it, felt safe & then somehow the fullness feeling is the ear canal contracting to close out the sound. Or does it have anything to do with the ear plugs. I'm trying to figure it out. Or is it tha tube?what do yous think about why our ears feel this fullness?

I did look up on computer what claritin D is. It's got pseudoephedrine sulfat 120mg/ Nasal decongestant along with Loratadine 5 mg/ Antihistamine in it.
Unfortunetly I only had 2 pills. It did really clear my ears with the first pill, second pill cleared, but not as good. I need to get more. If I can't get it over the counter I'll see about the Actifed, seems like it is simular. I think my daughter might have just regular claritin, I'll try it tonight & see what happens. fingers crossed.

I've been reading this book about our ears & it say's something about swimmers ear & that a Diuretic is perscribed for that to get rid of fluid.

Meredith, The actifed did help clear your ears. OK it seems we might be on the right track yippe
did the diuretic give u any relief yet? If so that would be stating that the fullness is from fluid.
I don't know exactly how decongestants work or antihistamines. I just know they clear your sinus & head from allergies. Wondering if it's clearing fluid as the diuretic does.
Even though this stinks big time it is interesting.
We should all become doctors after this. well---maybe not


Fiona, when I talk of pain it's physical pain., not sure about everyone I sould be more clear. your spasming in ear made me think that it's not yet there, meaning that if it were to go to the next level you might fell the fullness, but I have know idea. It's just the first thing I thought of because I not always feel the ear completly clogged, it kind of gets this contracting feeling also. like it contracts to fullness, then if I'm doing something it might contract back to alittle cleared feeling, but as soon as I relax the fullness is back. latley I've just had the fullness feeling, so it was great to feel alittle relief with the claritin d.

Laurene, I'm glad the TRT is working. it does scare me. My boyfriend just called and made an appointment for me to go to a hypnotist, which also scares me.The guy said he has helped others with hyperacusis. my appointment's not til aug.6th. I 'm waiting for a medical card or I would have seen an ENT already. I've been just going to my lyme doctor. I don't know much about the TRT yet, but I am glad to hear that it is working for u , I also have read a few others have gotten better with it. I would want to see if anyone got worse from it. we are all different & what works for one, might not work for the other or I may be wrong & TRT is the answer. Another thing I have to look into.

Mirjam, I was wondering if the fullness feeling is from the ear drum itself & your doctor did see a pressure point on eardrum.What does that mean?pressure point on eardrum? I can't wait to get insurance so I can go to ent. I feel so lucky to at least have everyone here to learn from. all of us communicating is so great. the temple of my head also feel pressure. I feel like my head is in a vice somtimes. I am not taking hardly any noise in , still no tv, no radio & no phone. staying in. less is better for me right now. The pressure & pain in head is better. hoping we can all get this under control & then completly getting rid of it.

well I gotta go, my ears have had enough of this computer.
good night
bev

 

 

 

 

 

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Lynn
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