Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 That sounds great for coping. However, there is an underlying problem going on. Something that will always be there that is so hard to even try to "control." It's as if something is "poking" the part of your brain that causes anxiety and anger and you are a puppet that can't help your reaction. It is an instant reflex that is uncontrollable. Yes, we need to find ways to cope with this condition, but what we really need is research to find out why it is happening!!! When is someone going to realize this and actually research this horrible condition??? It is so prevalent and affects so many people--but why study this when they can study why it is hard to talk when you have peanut butter in your mouth, or how many rings Saturn really has!! I'm so tired of the ridiculous studies they do!! They need to figure this out!! -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of D RoadsSent: Sunday, November 28, 2010 7:38 AMTo: Soundsensitivity Subject: Hearing Councelling Hi, I have just had my first hearing councelling for misphonia after being referred by my CBT Therapist. I thought I would share the bullet points in case it gives anyone some ideas to think about. She was very sympathetic and helpful as she also has experienced similar and she suggested a host of things for me to "consider". She confirmed that the noises I struggle with are doing me no medical harm or are no threat to me. Everyone would get annoyed if they had some apple eating for crisp crunching constantly in their face but some of us have a very low threshold before fight or flight and I also now scan my enviroments for every sound I could find annoying. My misphonia cv now includes tapping, pencils, coughing, snorting, squeezing air between teeth and am growing my list. She concentrated more on lifestyle and came up with the following to think about :- Get a Life (in the nicest possible way). Think about changing job to a more suitable working enviroment (currently a cramped office with 17 of the noisiest serial eaters you could imagine). Stop wearing headphones and listining to the radio to block out the sounds. Seek some form of meditation activity. Try to introduced more varied things to do in my spare time involving people (but do not sign up for a long evening class for example). Cancel Sky Sports TV subscription and direct the money into other activities / hobby. Go away on holiday for a complete break. Spend some money on myself. Take breaks from family duties. My issues require hearing councilling rather than psychiatry. She understood continually playing recordings on my iPod of trigger sounds was not working as I am always in control of it but I need to expose myself to the noises as much as possible and start counting to 3 then 10 then 30 and keep building up before flight. Basically (and I know it might not be what I wanted to hear (excuse pun)) but its down to me to change/cope better/improve. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2010 Report Share Posted November 29, 2010 Yeah, I agree with you Kathy...it's more than just learning to cope. I don't really think we're on the same spectrum as people who don't like nails down a blackboard, or screaming babies or things like that. However if we were on a spectrum with them it would be analogous to a paper cut versus being brutally stabbed in the abdomen over and over again. It's not just about putting up with it, it's about reversing the effects, finding something that will stop it so it doesn't have to be coped with! I hope they start researching it soon....we need to contact our local government representatives to get things started maybe??? > > That sounds great for coping. However, there is an underlying problem going > on. Something that will always be there that is so hard to even try to > " control. " It's as if something is " poking " the part of your brain that > causes anxiety and anger and you are a puppet that can't help your reaction. > It is an instant reflex that is uncontrollable. > > Yes, we need to find ways to cope with this condition, but what we really > need is research to find out why it is happening!!! > > When is someone going to realize this and actually research this horrible > condition??? It is so prevalent and affects so many people--but why study > this when they can study why it is hard to talk when you have peanut butter > in your mouth, or how many rings Saturn really has!! I'm so tired of the > ridiculous studies they do!! They need to figure this out!! > > Hearing Councelling > > > > > Hi, > > I have just had my first hearing councelling for misphonia after being > referred by my CBT Therapist. > > I thought I would share the bullet points in case it gives anyone some > ideas to think about. > > She was very sympathetic and helpful as she also has experienced similar > and she suggested a host of things for me to " consider " . > She confirmed that the noises I struggle with are doing me no medical harm > or are no threat to me. > > Everyone would get annoyed if they had some apple eating for crisp > crunching constantly in their face but some of us have a very low threshold > before fight or flight and I also now scan my enviroments for every sound I > could find annoying. My misphonia cv now includes tapping, pencils, > coughing, snorting, squeezing air between teeth and am growing my list. > > > > She concentrated more on lifestyle and came up with the following to think > about :- > > > > Get a Life (in the nicest possible way). > Think about changing job to a more suitable working enviroment > (currently a cramped office with 17 of the noisiest serial eaters you could > imagine). > > Stop wearing headphones and listining to the radio to block out the > sounds. > Seek some form of meditation activity. > Try to introduced more varied things to do in my spare time involving > people (but do not sign up for a long evening class for example). > Cancel Sky Sports TV subscription and direct the money into other > activities / hobby. > Go away on holiday for a complete break. > Spend some money on myself. > Take breaks from family duties. > > > > My issues require hearing councilling rather than psychiatry. > > She understood continually playing recordings on my iPod of trigger sounds > was not working as I am always in control of it but I need to expose myself > to the noises as much as possible and start counting to 3 then 10 then 30 > and keep building up before flight. > > Basically (and I know it might not be what I wanted to hear (excuse pun)) > but its down to me to change/cope better/improve. > > Regards > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Maybe, although I don't know if they'd really care because we don't have that kind of numbers yet. The NIH was interested. I'm hoping they are still trying to put a study together. Hearing Councelling> > > > > Hi,> > I have just had my first hearing councelling for misphonia after being> referred by my CBT Therapist.> > I thought I would share the bullet points in case it gives anyone some> ideas to think about.> > She was very sympathetic and helpful as she also has experienced similar> and she suggested a host of things for me to "consider".> She confirmed that the noises I struggle with are doing me no medical harm> or are no threat to me.> > Everyone would get annoyed if they had some apple eating for crisp> crunching constantly in their face but some of us have a very low threshold> before fight or flight and I also now scan my enviroments for every sound I> could find annoying. My misphonia cv now includes tapping, pencils,> coughing, snorting, squeezing air between teeth and am growing my list.> > > > She concentrated more on lifestyle and came up with the following to think> about :-> > > > Get a Life (in the nicest possible way).> Think about changing job to a more suitable working enviroment> (currently a cramped office with 17 of the noisiest serial eaters you could> imagine).> > Stop wearing headphones and listining to the radio to block out the> sounds.> Seek some form of meditation activity.> Try to introduced more varied things to do in my spare time involving> people (but do not sign up for a long evening class for example).> Cancel Sky Sports TV subscription and direct the money into other> activities / hobby.> Go away on holiday for a complete break.> Spend some money on myself.> Take breaks from family duties.> > > > My issues require hearing councilling rather than psychiatry.> > She understood continually playing recordings on my iPod of trigger sounds> was not working as I am always in control of it but I need to expose myself> to the noises as much as possible and start counting to 3 then 10 then 30> and keep building up before flight.> > Basically (and I know it might not be what I wanted to hear (excuse pun))> but its down to me to change/cope better/improve.> > Regards> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 I would contact the NIH about the study. Contact your gov. representatives to urge them not to repeal health care reform. : - )To: Soundsensitivity Sent: Tue, November 30, 2010 4:26:22 PMSubject: RE: Re: Hearing Councelling Maybe, although I don't know if they'd really care because we don't have that kind of numbers yet. The NIH was interested. I'm hoping they are still trying to put a study together. Hearing Councelling> > > > > Hi,> > I have just had my first hearing councelling for misphonia after being> referred by my CBT Therapist.> > I thought I would share the bullet points in case it gives anyone some> ideas to think about.> > She was very sympathetic and helpful as she also has experienced similar> and she suggested a host of things for me to "consider".> She confirmed that the noises I struggle with are doing me no medical harm> or are no threat to me.> > Everyone would get annoyed if they had some apple eating for crisp> crunching constantly in their face but some of us have a very low threshold> before fight or flight and I also now scan my enviroments for every sound I> could find annoying. My misphonia cv now includes tapping, pencils,> coughing, snorting, squeezing air between teeth and am growing my list.> > > > She concentrated more on lifestyle and came up with the following to think> about :-> > > > Get a Life (in the nicest possible way).> Think about changing job to a more suitable working enviroment> (currently a cramped office with 17 of the noisiest serial eaters you could> imagine).> > Stop wearing headphones and listining to the radio to block out the> sounds.> Seek some form of meditation activity.> Try to introduced more varied things to do in my spare time involving> people (but do not sign up for a long evening class for example).> Cancel Sky Sports TV subscription and direct the money into other> activities / hobby.> Go away on holiday for a complete break.> Spend some money on myself.> Take breaks from family duties.> > > > My issues require hearing councilling rather than psychiatry.> > She understood continually playing recordings on my iPod of trigger sounds> was not working as I am always in control of it but I need to expose myself> to the noises as much as possible and start counting to 3 then 10 then 30> and keep building up before flight.> > Basically (and I know it might not be what I wanted to hear (excuse pun))> but its down to me to change/cope better/improve.> > Regards> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 I would contact the NIH about the study. Contact your gov. representatives to urge them not to repeal health care reform. : - )To: Soundsensitivity Sent: Tue, November 30, 2010 4:26:22 PMSubject: RE: Re: Hearing Councelling Maybe, although I don't know if they'd really care because we don't have that kind of numbers yet. The NIH was interested. I'm hoping they are still trying to put a study together. Hearing Councelling> > > > > Hi,> > I have just had my first hearing councelling for misphonia after being> referred by my CBT Therapist.> > I thought I would share the bullet points in case it gives anyone some> ideas to think about.> > She was very sympathetic and helpful as she also has experienced similar> and she suggested a host of things for me to "consider".> She confirmed that the noises I struggle with are doing me no medical harm> or are no threat to me.> > Everyone would get annoyed if they had some apple eating for crisp> crunching constantly in their face but some of us have a very low threshold> before fight or flight and I also now scan my enviroments for every sound I> could find annoying. My misphonia cv now includes tapping, pencils,> coughing, snorting, squeezing air between teeth and am growing my list.> > > > She concentrated more on lifestyle and came up with the following to think> about :-> > > > Get a Life (in the nicest possible way).> Think about changing job to a more suitable working enviroment> (currently a cramped office with 17 of the noisiest serial eaters you could> imagine).> > Stop wearing headphones and listining to the radio to block out the> sounds.> Seek some form of meditation activity.> Try to introduced more varied things to do in my spare time involving> people (but do not sign up for a long evening class for example).> Cancel Sky Sports TV subscription and direct the money into other> activities / hobby.> Go away on holiday for a complete break.> Spend some money on myself.> Take breaks from family duties.> > > > My issues require hearing councilling rather than psychiatry.> > She understood continually playing recordings on my iPod of trigger sounds> was not working as I am always in control of it but I need to expose myself> to the noises as much as possible and start counting to 3 then 10 then 30> and keep building up before flight.> > Basically (and I know it might not be what I wanted to hear (excuse pun))> but its down to me to change/cope better/improve.> > Regards> > > Quote Link to comment Share on other sites More sharing options...
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