nickay12
Registered: 06/04/09
Posts: 2
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| | 06/04/09 at 07:53 AM | Reply with quote | #301 |
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Hello I'm also new to this, I also suffer from this disorder.. it affects me, my family and my friends. I've just got out of mental hospital because of it. I've taken many mood stabilizers to try and fix the it, I've had NLP treatment CBT EFT none of them have helped. I was wandering if anyone has completely overcome the disorder and how?
Thankyou ;o)
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anon1116
Registered: 06/03/09
Posts: 7
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| | 06/04/09 at 08:01 AM | Reply with quote | #302 |
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Hi.
I am new as well. Just discovered yesterday that I am not alone in this. From what I can tell, there is no specific treatment which is very discouraging. I do feel better just knowing that I am not crazy and this is a "real" thing.
Dawn.
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 06/05/09 at 03:53 AM | Reply with quote | #303 |
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Quote: Originally Posted by nickay12
I was wandering if anyone has completely overcome the disorder and how?
Welcome to everyone new!
nickay12... It sounds like you have gone through a lot of things to try and fix this thing. I have been on medications myself with no success. The only thing that has helped me a little is CBT and an anti-anxiety med. It doesn't take the problem away, it just allows me to get by a little easier but it takes constant work. I'm better for knowing it though. As far as I know, nobody has overcome this yet. But, we can't let that discourage us because the answers are out there... we just need to find them. We are all hopeful that a study will be done on this condition.
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anon1116
Registered: 06/03/09
Posts: 7
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| | 06/05/09 at 06:50 AM | Reply with quote | #304 |
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What is the status on the study? I sent an e-mail to the address listed, but did not get a response. I would like to know how we can participate.
Dawn.
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 06/06/09 at 12:09 AM | Reply with quote | #305 |
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The status (a few months ago) was that they were in the process of deciding whether to do a study on this or not. It's not a definite, it was in the planning stages. They told us they would have more info in about 6 months... which is coming up here fast. If anyone knows more it would be Dr. Johnson, and I'm sure she would tell us the moment she hears. Until then, we just have to hang tight and keep our fingers crossed.
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DrJ
Registered: 10/28/08
Posts: 204
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| | 06/06/09 at 01:32 AM | Reply with quote | #306 |
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I will check with the Drs. at the NIH and see how things are going. I am also aware of the interest at the House Institute for a Genetic Study, but that study will require quite a large grant, i.e., $1 million plus for a full genetic study on at least 500 subjects.
One can always hope and work to see if these things can be accomplished.
There was a fascinating show on Tourette's recently on public television with a Dr. Mink (spelling) and it seemed to me there could be overlapping ideas for the work with this sub population.
I will report back next week, if possible. I have my fingers crossed and I also feel confident that all things work for good in the long run.
Dr. J
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Marsha Johnson |
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 06/07/09 at 01:03 AM | Reply with quote | #307 |
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Quote: Originally Posted by DrJ
I will check with the Drs. at the NIH and see how things are going. I am also aware of the interest at the House Institute for a Genetic Study, but that study will require quite a large grant, i.e., $1 million plus for a full genetic study on at least 500 subjects.
Thanks Dr. J! Wow, a genetic study would be awesome too, but that's a hefty price tag! Gosh I hope a study takes place, but if not, at least interest has been sparked and perhaps down the road one will be done. Thanks for all your help!
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Debbie
Registered: 08/26/08
Posts: 1,362
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| | 06/07/09 at 07:44 AM | Reply with quote | #308 |
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At a clinical research meeting, we were recently passed out a call for research proposals on 'obscure health topics' - will look back at the wording.
There is also currently a call for genetic study subjects for those with OCD.
Not sure if 'OCD spectrum' would count or what would be considered.
Contacts can probably be found @ OCF.org.
Debbie
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Ronf227
Registered: 06/02/09
Posts: 10
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| | 06/15/09 at 02:05 PM | Reply with quote | #309 |
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Hi All, Lots of great information out here and I have been able to at least put some of the pieces in place over the last couple of weeks after finding you guys? I really am getting a lot out of this and am finally able to work with this instead of just being on a loop!
I have a specific question for anyone that wishes to answer. It's a little hard to convey but, I will try. When it comes to annoying sounds, are there any exceptions in the degree of anger you feel? Egg. (environment) Picnic vs Working at the office? (place) In the Car vs. at Home? (emotion) Good mood vs. Bad mood, (time) night vs. Day? Someone you are attracted to vs. someone you loathe? lol
Also if there are any pet owners that can confirm if the same sounds bother them ( to the same degree) if its a dog chewing his rawhide or a cat crunching their hard food, etc?
Thanks,
Ron
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 06/16/09 at 01:21 AM | Reply with quote | #310 |
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Hi Ron,
For me, most of the time it doesn't matter where I am, who I'm with, etc... as to whether the sounds are more annoying or not. Of course, if I'm in a bad mood already then I get even more irritated but I think that's probably expected. I do have more anxiety and panic if I'm in a situation where I feel trapped and can't leave if I feel the need, but that may be my anxiety/panic disorder talking and not my misophonia.
As far as pets go... I have 2 dogs. I absolutely loathe the sound of them licking their paws. However, one dog bothers me more than the other. Strange. Also, the one that bothers me with the licking doesn't bother me with her eating food but the other one does. I get just as mad inside but I don't express it as much as I do with a person since my dogs don't understand why I'm going nuts. They just get the occasional stuffed animal tossed in their direction. 
Glad to hear you are finding information here helpful!!
Darlene
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Debbie
Registered: 08/26/08
Posts: 1,362
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| | 06/16/09 at 10:58 AM | Reply with quote | #311 |
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Hi Ron,
Just my 2ยข, of course.
It seems in the 'misophonia' threads that people sometimes report greater sensitivity in places that are more familiar, and more sensitivity around more familiar people.
That is, no matter the level of affection.
Perhaps this may be due to the way the brain has different tasks to accomplish in a new vs. familiar settings.
Some people have noted that their conscious minds seem to play some role in 'egging on' or diffusing the responses to the trigger sounds.
For example, a reaction to a trigger sound might stop if the person realizes the sound was caused by something other than the assumed 'problem' source, or be reduced to some degree, & perhaps cumulatively, if someone uses CBT tools.
It seems there are many unique differences in what people report but there are also some trends.
The tendancy or even the 'ability,' of someone to percieve trigger sounds with such acuity, continuity, and sense of alarm seems to spring from the 'instictive' versus 'learned/conditioned' part of the nervous system.
At the same time, it seems natural that learning & conditioning; thoughts feelings, may influence aspects within the overall picture of the condition.
Sincerely,
Debbie
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Ronf227
Registered: 06/02/09
Posts: 10
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| | 06/16/09 at 12:00 PM | Reply with quote | #312 |
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Hi Guys,
Thanks so much for your input! This is Great! I can relate to what you are saying and it makes sense. The one thing that I am intrigued with is the "Attitude" behind the sound. This may seem odd but, I can also "Vibe" a persons "mood" by the way that they chew and make sounds. Some people are "bangers" when they get upset and make a lot of noise out of frustration. I am not sure if it relieves tension for them or it's just a juvenile way of acting out their displeasure in the circumstance.
I notice that in people I am familiar with I pick up the differences in the sounds that they make and for some strange reason I find it "More" irritating when there is Negative energy associated with the sound. Does this make sense or am I even more out there that I realize? 
Thanks,
Ron
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AnnePamela
Registered: 06/14/09
Posts: 2
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| | 06/17/09 at 12:53 AM | Reply with quote | #313 |
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I find it does not matter what the relationship is. This is the really conflicting and sad part of this disorder. It has started to cause friction among family members I love. It is very bizarre. I can be fine, calm, happy and loving and literally severe agitation takes over when gum comes on the scene. I have identified with what others have said about watching people like hawks. I do the same thing. In my annoyance I tend to fixate on their mouths. Sometimes when I am driving and I see a heavy chomper / this is awful I equate it to " piggyness". Seriously, it is a pretty unattractive habit. I notice if people eat their food in weird ways - for example letting their tongue hang out of the mouth with the fork, it annoys me and grosses me out.
My mom for the most part won't chew gum in my presence. This is where the issue started and really intensified for me.
I can't remember if it is this post or another one but I hate swinging legs and feet. I don't like contorting, cracking toes either.
I was at an educational conference today. Well after lunch here comes the gum, oh happy day - not. I can always spot the gummer and feel irritation and resentment. If it is a complete stranger and I will never see them - I feel free to exercise stink eye.
Wow, it is so therapuetic to vent in this safe arena with people similar to me.
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 06/17/09 at 11:26 PM | Reply with quote | #314 |
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Quote: Originally Posted by AnnePamela
If it is a complete stranger and I will never see them - I feel free to exercise stink eye.
Wow, it is so therapuetic to vent in this safe arena with people similar to me.
*giggle* That "stink eye" comment cracked me up... I do that too! I bet we are the best dishers of stink eye there is! It is nice to be able to vent to people who actually understand and relate to what you are going through.
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nickay12
Registered: 06/04/09
Posts: 2
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| | 09/29/09 at 02:00 PM | Reply with quote | #315 |
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Hallo everyone
Damn this stuff really drives me nuts  S
I was reading the other day that PET scans indicate differences in brain activity of OCD patients versus the 'normal' brain.
Anyone ever had a brain scan???
thanks D
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kellyg
Registered: 10/05/09
Posts: 2
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| | 10/05/09 at 11:45 AM | Reply with quote | #316 |
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Hi everyone! I'm new to the forum and to beginning to understand what has plagued me for nearly 30 years. I've read through a lot of the threads and I hope I've figured out correctly that I suffer from misophonia, and have since I was about 5 or 6 years old. I would fly into a rage at the dinner table if one of my younger brothers or even my parents made mouth noises. This problem has followed me my entire life and seems to have no discrimination between the people I don't know at all or the people whom I love. In a restaurant I can hear someone smacking or crunching into a chip from completely across the room. I completely lose my appetite and get so mad that people can have such horrible manners. My triggers are gum chewing, smacking, popping noises when someone chews, the initial crunching people do when first biting into a chip or a handful of popcorn; and then repetitive noises such as pen clicking, foot tapping, and when someone opens a crinkly candy wrapper and it seems like it lasts for 30 minutes. I've thought I was crazy for years and just happened to stumble upon some information and then this board. I am SO RELIEVED to know that I'm not alone in this. This problem is seriously affecting my marriage...I have asked my hubby not to chew gum in the car with me and he still does it and it makes me want to open the car door and kick him out onto the highway. I can barely eat dinner with him. I also have problems at work - I asked to move desks because I shared an office with a person who chewed and smacked gum all day long for 6 months and I finally thought my head was going to blow off. I tried to tell him about my problem and ask him to chew more quietly and he seemed to make an effort but then forgot. I sit in meetings with pen clickers and I cannot hear anything that is being said...all I can hear is the incessant click click click....I look around in a rage and nobody else is even paying attention to it. I've now decided that something must be done because I am 3 months pregnant and I'm terrified that my anxiety about these noises is going to harm my developing child, and I certainly don't want to "teach" this to a child once he/she is born! I'm lost as to what to do about this...do I see an audiologist, a psychiatrist, or what? I've done tons of internet searches and haven't succeeded in finding much definitive information. Is this really still a dark ages issue? Thanks in advance for any guidance you can give, and I appreciate your letting me come here and vent. I feel a little better now. |
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beanbrown
Registered: 09/10/09
Posts: 22
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| | 10/05/09 at 06:45 PM | Reply with quote | #317 |
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zomg Kelly, I could have written your article myself!! Almost exactly the same life for me, and I have also recently found this place. My wife is extrodinary and super cool about my misophonia (15 year anniversary this Dec), although many of the same conversations about gum chewing, crunchy food, etc..
Knowing that there is a commuinity is tremendous, and has helped me quite a bit (as well as a few other key people in my life that are trying to understand what I'm talking about)...there is validation.
I have found (hopefully temporary) help for misophonia so that I can be functional at certain events, and it even is helping day to day, although I found it before I found this site, and I haven't gotten responses about it on this site, although I'd be happy to share with you or anyone, just PM me 
Welcome to the forums, Kelly. As many others have done for me, I hope you feel comfortable here.
Cheers,
Eric
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kellyg
Registered: 10/05/09
Posts: 2
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| | 10/05/09 at 08:44 PM | Reply with quote | #318 |
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Hi Eric,
Thank you very much for your warm welcome and kind offer to share more information with me via PM. Edited: I was finally able to get an abbreviated version of the previously attempted 5 longer more well thought out PMs to you. I look forward to connecting! Best,
Kelly
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DrJ
Registered: 10/28/08
Posts: 204
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| | 10/11/09 at 10:02 PM | Reply with quote | #319 |
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I gave a lecture this week end to a large group of speech pathologists and a few audiologists and I described the syndrome of selective sound sensitivity along with phonophobia, hyperacusis, recruitment, and hyperacusis....also misophonia.
I was not surpirsed when about five professionals raised their hands to indicate they suffered from the symptoms of 4S. These were graduate school professionals working in various fields, who had no idea their problems were more common than suspected and that someone had noticed.
Some were more severe than others, one had a very mild case. They shared a bit with the group on their histories and guess what! They fit the profile like a T fits a t-shirt.
So what can we draw from this conclusion? If it smells like a rose, looks like a rose and grows like a rose, it might be a rose.
There are too many distinctly similar characteristics of that particular condition to generalize it or hook it up as part of some other already recognized condition, i.e., OCD. This is a situation (or a rose) in its very own right (or garden).
Dr. J
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Marsha Johnson |
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DanMalcore
Registered: 04/25/05
Posts: 906
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| | 10/12/09 at 03:38 PM | Reply with quote | #320 |
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Dear Marsha
First of all I want to congratulate you on your election to the American Tinnitus Association Board. I know tinnitus is near and dear to your heart and I am sure they will benefit from your input.
Your message board is active and has wonderful participation. One facet of your message board that I enjoy is that people feel free to express themselves without others becoming judgemental. That can be a good thing unless someone is way out in right field and needs to be reeled in, given good information, and redirected in the right path.
I am wondering what, in your mind, is the distinction between 4S and misophonia?
 Dan
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sozzur
Registered: 09/08/09
Posts: 10
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| | 10/12/09 at 03:57 PM | Reply with quote | #321 |
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DrJ,
You are amazing and we are thankful for your hard work.
Do you suggest seeing a psychiatrist? I saw a psychiatrist a few months ago and he immediately put me on anti-psychotics. Which knocked me out 24/7 (I guess it works if you can't even stay awake through the noises). Ok, I am sooo crazy that I need to sedated 24/7. I can't be. I have a year and a half yr kid. I need to have energy. I need more energy, NOT less.
No one in my tiny town even begins to hear what I am saying. I keep asking for a referral to see an audiologist or neurologist and they all refuse. I even went to my primary doctor and told her the story and she said I don't need to see an audiologist and that it was all mental and perhaps I should try a different psychiatrist who will listen instead of assume I am CRAZY and making stuff up in my head (hearing noises) that don't exist.
As a matter of fact - get this - my primary care doc did a hearing test and she said I have hearing loss in my right ear, and that there was nothing really to do for it. Against her findings, I feel like I have superman ears. I hear too well. I hear at the same pitch that dogs hear. Hearing LOSS? What is happening?
Anyway, so no referral to an audiologist nor to neurologist. Where do I start? Also, I have a LOT of overlapp with Dystonia symptoms. Is that common? Also, do you think severe trauma to the head could be responsible for 4S?
Thank you for your dedication and all of your efforts.
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SO |
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DrJ
Registered: 10/28/08
Posts: 204
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| | 10/16/09 at 12:39 AM | Reply with quote | #322 |
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Dan: You are such a nice guy, I am pleased to be included in this group from time to time, as well as I noticed that some of my posts were included in your last printed Newsletter, very informative btw.
I spend quite a bit of time trying to figure out that distinction myself and in discussion with others in my field. There seem to be a few significant differences perhaps that could support the different categorization of types of sound sensitivities. (I have even considered helping to form a non profit group call Auditory Sensitivities Association (ASA) to help define and support those with troubling auditory symptoms who do not appear to have tinnitus or other pathologies.
Your website has certainly collected quite a number of people who have described in great detail some of the various types. Off the top of my head I can think of several here including classic hyperacusis, tensor tympani syndrome, middle ear pain related to certain sound stimulations, fluctuating types of hyperacusis, recruitment which is associated with hearing loss, and issues related to referred ear pain and jaw movements which also appear to be triggered by sound exposures, and so on.
Like we said before, 4S and misophonia appear to have been 'coined' around the same time to describe one of these variations of sound sensitivities. I will try to be brief here and sum this up
misophonia (dislike of sounds, often includes all sounds of all types, but mainly dislike of moderate to normal-but-loud sound, onset at any age, can be treated with cycles of pleasant sound exposure in cycles).
selective sound sensitivity (inability to tolerate certain softer level sounds, particularly characteristic onset pattern in child hood, presence of 'trigger' sources such as parent or sibling initially, persists throughout life, and is not responsive whatsoever to improvement with acoustic therapies other than use of masking devices to provide partial obscuring noise)
Both appear to have strong connections with the autonomous nervous system in provoking severe emotional and psychological reactions and behaviors.
I myself have rarely treated misophonics, even with 12 years full time in practice. However, I have evaluated and provided maskers for quite a large group of 4S patients.
Hope this helps, Dan. I am committed, as you are, to open doors and illuminate the pathway that will lead us to fuller understanding of these situations and to encourage the discovery of effective medical approaches. These individuals suffer. I know, a family member developed 4S.
Dr J
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Marsha Johnson |
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Rob
Registered: 05/02/05
Posts: 2,670
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| | 11/01/09 at 12:14 PM | Reply with quote | #323 |
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Marsha -- Your post raises several questions and concerns. 1.) In your previous post, you wrote about "classic hyperacusis, tensor tympani syndrome, middle ear pain related to certain sound stimulations ... recruitment ... and issues related to referred ear pain and jaw movements which also appear to be triggered by sound exposures ..." I suspect you agree that each of these conditions have clinically significant differences. Would you please explain the clinically significant differences, as you see them, between misophonia and 4S? 2.) Leaving aside anything you have written about it, where is the term '4S' used in the audiological literature? 3.) Why do you write that "4S and misophonia appear to have been 'coined' around the same time to describe one of these variations of sound sensitivities" when, in fact, the term 'misophonia' was coined years earlier than your term? Furthermore, since the quote I have just used clearly states both of these terms "describe one of these variations of sound sensitivities" aren't you yourself saying there are no clinically significant differences between these two categories? 4.) You write that 4S and misophonia "appear to have strong connections with the autonomous nervous system in provoking severe emotional and psychological reactions and behaviors." I think you intended to write "autonomic" nervous system, and I suspect you would agree the limbic system also comes into play. Furthermore, these reactions are not merely "strong" but abnormally strong reactions which result in enhanced connections between the auditory and limbic systems, without invoking a significant activation of the auditory system. Do you agree? 5.) You write that misophonia "often includes all sounds of all types, but mainly dislike of moderate to normal-but-loud sound". But Dr. Jastreboff, who coined the term, does not describe misophonia as such. 6.) You write that 4S "is not responsive whatsoever to improvement with acoustic therapies". Would you not agree that treatment for patients who strongly dislike certain sounds involves, in part, being exposed to these sounds? 7.) Please describe how masking a sound that a patient strongly dislikes changes an abnormally strong reaction of the autonomic nervous system and limbic system into a normal reaction. In the same way that it is impossible to habituate to tinnitus when we cannot hear it (by fully masking it), how can one ameliorate a dislike of a sound without hearing it? Rob |
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DrJ
Registered: 10/28/08
Posts: 204
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| | 11/01/09 at 01:56 PM | Reply with quote | #324 |
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Rob, you have lots of questions.
I have answered many times on this board to your questions to the best of my ability.
Dan asked me to post my thoughts about this area, and so I have followed through with the post above yours.
I don't post much here anymore, as you know, and the main reason is the attack-dog type strategy that I encounter when I share the knowedge I have slowly accumulated over these 12 long years. Twelve years is a long time to focus on the two particular areas of tinnitus and hyperacusis, Rob, and you are surely an important resource in that 12 year journey, at least for me. My perspective is that of one who evaluates and provides help for people with these symptoms.
But I don't feel overly compelled to respond to your multiple points. I have shared what I have found and perceived to the best of my ability and feel quite upheld by the thousands of people with 4S who constantly serve to support some of my observations, again and again.
Someone always has to begin things, I suppose, so perhaps in time to come, there will be more articles and interest in this area and then you can google away to your delight and find many references from different sources. There are many more unknowns about the auditory system than knowns at this point, so it is not really unusual to have very limited 'fact-based' knowledge.
How do you expect something new to birth? What do you see as the 'Rob-approved' method of recognizing something new in the world of conditions?
Dr. J
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Marsha Johnson |
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/01/09 at 02:26 PM | Reply with quote | #325 |
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Who says we are fully masking the sounds? its more like blending them into the background a little better, which turns down the emotional volume a bit. But I realize this is all very hard to understand for people who do not have 4s.
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/01/09 at 06:35 PM | Reply with quote | #326 |
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If only 4s were actually misophonia or more like hyperacusis, people who have it might actually stick around at this board a little bit longer.
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Rob
Registered: 05/02/05
Posts: 2,670
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| | 11/01/09 at 08:43 PM | Reply with quote | #327 |
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Maikaefer, individuals with tinnitus partially mask sound and also find it can be very helpful to them. ******** Marsha writes -- I don't post much here anymore, as you know, and the main reason is the attack-dog type strategy that I encounter when I share the knowedge I have slowly accumulated over these 12 long years. Marsha, there haven't been attacks here in quite a while. But I don't feel overly compelled to respond to your multiple points. I don't understand why you feel that way. I asked you good, fair questions. Dan asked me to post my thoughts about this area, and so I have followed through with the post above yours. Dan asked if you would tell us what you believe is the distinction between misophonia and 4S. Your answer lists some attributes of misophonia. How do you expect something new to birth? Please explain what is new, as you see it. What do you see as the 'Rob-approved' method of recognizing something new in the world of conditions? Please do not make it personal to me. A condition is regarded as new in medicine when it has significant clinical differences from an existing condition. Do you not agree? I am committed, as you are, to open doors and illuminate the pathway that will lead us to fuller understanding of these situations and to encourage the discovery of effective medical approaches. Regarding effective medical approaches for individuals who suffer from this condition, in my opinion, an effective medical approach exists right now. |
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/02/09 at 08:50 AM | Reply with quote | #328 |
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Bless you Dr J, for having the respect to believe us when we tell you that we have tried so many medical treatments for 4s, and nothing has been very effective.
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Rob
Registered: 05/02/05
Posts: 2,670
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/02/09 at 10:18 AM | Reply with quote | #330 |
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drugs, drugs, drugs and drugs, therapy, cbt, desensitization, meditation, relaxation techniques
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Johnloudb
Registered: 07/31/09
Posts: 541
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| | 11/02/09 at 01:30 PM | Reply with quote | #331 |
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Like Rob mentions partially masking the sound does help since it reduces the effective strength of the sound.
Have you tried facing your disaffections and thinking good thoughts. I've overcome misophonias that way. Changing how you respond to the sound is key. Maybe that's part of CBT, don't know but I'd like to learn more about that.
__________________
John
~ Patience and Persistence Pays Off ~
My Story:
http://sites.google.com/site/johnsaudiopage/ |
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Rob
Registered: 05/02/05
Posts: 2,670
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| | 11/02/09 at 08:27 PM | Reply with quote | #332 |
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maikaefer -- I went through all your posts just now and several things you wrote stood out for me. If you would find it helpful to talk more about these things, let's do it. I believe you are suffering from a challenge that you can do something about. Yes, I can neutralize the anxiety and emotional reaction for many triggers, but I am still left with as Debbie put it the extreme "hyper-focus on/vigilence to certain environmental signals, in conjunction with the loss of attentiveness to surrounding signals." I just can't think strait, and this is not unrealistic thinking, this is not emotion, this is fact. If you are saying that there is no emotion involved when you feel you cannot think straight or lose attentiveness, then I'd suggest a great deal of what you describe about your experience sounds as if it has a lot to do with your emotions. I see a lot of promise in that, and I think you have an opportunity to improve your challenges with sound but it will require hard work. And yes, anxiety too about being responded to as a someone who is either whining or not trying hard enough. I don't hear you as someone who is whining or not trying hard enough. those of us with this problem have heard "try harder" too many times before. It has nothing to do with trying harder. Whoever has told you that is a bonehead. which is why it kind of insults me that there is this insistence here on sticking with some kind of generic treatment protocol for a problem like misophonia that is obviously not the same thing. The Jastreboffian treatment for misophonia which often accompanies hyperacusis will not help you. if I had found anything earth-shattering to help those suffering with 4s, I would shout it from the rooftops here and elsewhere. I suggest that the best way you can help others is to see if there is anything you can find for yourself that is helpful to you and begin there.
I often have a hard time being with people due to 4s. Can you explain what you mean? What is your experience like for you around people?
I am actually here because I hope to help others, maybe by contributing something here to others, my life will become more normal. I just wonder if this is a time for you to find the help you need preparatory to trying to help someone else. This problem started for me with eating noises with my family Which ones? I used to excuse myself to go to the bathroom and just stay in there until most of the chewing was over, that's how much it bothered me. I'm 46 now and can't say that eating noises are my biggest problem anymore, but there are other noises and sights which cause me more problems now. Would you be willing to share more about that? Also it is much easier for me to eat with other people other than my family, which I do some happily. So, it isn't the sounds per se which affect you. It sounds as if it has more to do with the context in which you hear those sounds. Another way to say this is that it is not accurate to say you have a sensitivity to selective sounds. You have a sensitivity to selective sounds in certain contexts but not in others. Does that seem true to your experience? So I for one, would say that NOT eating around your family, might not be such a wrong habit for you to have at this time, as long as you still keep trying to eat with some other people like your friends, people with whom you may not feel so powerless around. Or maybe with the members of your family who bother you less. When you talk about feeling powerless in this way, I guess I think back to what you wrote about emotions and I want to suggest to you that your emotions are very much a part of your experience with sound. They may be the missing link that could be the key to your feeling better. Personally I wouldn't presume to be able to figure out the root cause of my 4s myself, though scientists figuring it out could make a big difference knowing in terms of how to better treat it, even if we are only treating it psychologically. But you are describing a psychologically-based problem. It is presenting itself via certain sounds heard in certain contexts, but it is not an audiologically-based problem. I agree that cognitive behavior therapy has been very helpful to me as well for managing the 4s /misophonia problem better I'm glad, but what you wrote below seems to say that nothing has been very helpful. Bless you Dr J, for having the respect to believe us when we tell you that we have tried so many medical treatments for 4s, and nothing has been very effective. |
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/03/09 at 08:06 AM | Reply with quote | #333 |
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Quote: I went through all your posts just now and several things you wrote stood out for me. If you would find it helpful to talk more about these things, let's do it. I believe you are suffering from a challenge that you can do something about.
Yes, I can neutralize the anxiety and emotional reaction for many triggers, but I am still left with as Debbie put it the extreme "hyper-focus on/vigilence to certain environmental signals, in conjunction with the loss of attentiveness to surrounding signals." I just can't think strait, and this is not unrealistic thinking, this is not emotion, this is fact.
If you are saying that there is no emotion involved when you feel you cannot think straight or lose attentiveness, then I'd suggest there is a great deal about what you write about your experience that sounds as if it has a great deal to do with your emotions. I see a lot of promise in that, and I think you have an opportunity to improve your challenges with sound but it will require hard work.
Are you telling me it is not possible for me to experience hyper-focus and vigilance without emotion for certain triggers? and how do you know? I have already put a lot of hard work into this with quite a few doctors.
Quote: And yes, anxiety too about being responded to as a someone who is either whining or not trying hard enough.
I don't hear you as someone who is whining or not trying hard enough.
those of us with this problem have heard "try harder" too many times before.
It has nothing to do with trying harder. Whoever has told you that is a bonehead.
Right, I know that, I was responding to the bonehead's insinuations in those posts.
Quote: which is why it kind of insults me that there is this insistence here on sticking with some kind of generic treatment protocol for a problem like misophonia that is obviously not the same thing.
The Jastreboffian treatment for misophonia which often accompanies hyperacusis will not help you.
Because I don't have either misophonia or hyperacusis.
Quote: if I had found anything earth-shattering to help those suffering with 4s, I would shout it from the rooftops here and elsewhere.
I suggest that the best way you can help others is to see if there is anything you can find for yourself that is helpful to you and begin there.
Once again that was an attack at the bonehead for withholding information from us that he claimed could help remarkably.
Quote: I often have a hard time being with people due to 4s.
Can you explain what you mean? What is your experience like for you around people?
I would rather not discuss it on this board, I do not feel safe here.
Quote: I am actually here because I hope to help others, maybe by contributing something here to others, my life will become more normal.
I just wonder if this is a time for you to find the help you need preparatory to trying to help someone else.
Once again this was in response to a comment that the bonehead made, which really does not make much sense out of context here. I have been trying to find help for this for 30 years.
Quote: This problem started for me with eating noises with my family
Which ones?
Its really much too complicated for the internet. I rarely share the details of this humiliating condition.
Quote: I used to excuse myself to go to the bathroom and just stay in there until most of the chewing was over, that's how much it bothered me. I'm 46 now and can't say that eating noises are my biggest problem anymore, but there are other noises and sights which cause me more problems now.
Would you be willing to share more about that?
I doubt it would be helpful for me to share here, but thank you.
Quote: Also it is much easier for me to eat with other people other than my family, which I do some happily.
So, it isn't the sounds per se which affect you. It sounds as if it has more to do with the context in which you hear those sounds. Another way to say this is that it is not accurate to say you have a sensitivity to selective sounds. You have a sensitivity to selective sounds in certain contexts but not in others. Does that seem true to your experience?
Nope, I have an easier time eating with other people who eat quietly and who I have NOT spent years and years eating with in discomfort. I would say it is more of reinforcing of a negative experience thru repeated exposures over time than a context thing. Though context can always additionally add or subtract from the problem as well.
Quote: So I for one, would say that NOT eating around your family, might not be such a wrong habit for you to have at this time, as long as you still keep trying to eat with some other people like your friends, people with whom you may not feel so powerless around. Or maybe with the members of your family who bother you less.
When you talk about feeling powerless in this way, I guess I think back to what you wrote about emotions and I want to suggest to you that your emotions are very much a part of your experience with sound. They may be the missing link that could be the key to your feeling better.
If you look back at that whole thread, the teen I was responding to was the one who was talking about feeling powerless. I do not feel powerless at the dinner table at this time. I am just trying to moderate the amount of reinforcement of discomfort.
Quote: I agree that cognitive behavior therapy has been very helpful to me as well for managing the 4s /misophonia problem better
I'm glad, but what you wrote below seems to say that nothing has been very helpful.
Managing, I am talking about managing the anxiety and depression that has resulted from having this condition because those things only make the 4s worse. Managing getting thru the situations I need to in life, exposures if you will, there is no shortage of them. Besides in that particular thread, I was trying to be very encouraging about getting help because I thought that particular poster really needed to be seen by a doctor right away.
Quote: Bless you Dr J, for having the respect to believe us when we tell you that we have tried so many medical treatments for 4s, and nothing has been very effective.
Let me also point out that I use the word "very", in which I am referring to the 4s itself not how I am managing it. My life is a trainwreck because of the 4s, honestly it is.
Do you have something in the way of new help here that I haven't already gotten through my cognitive behaviorial therapists?
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maikaefer
Registered: 02/01/09
Posts: 51
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| | 11/03/09 at 08:13 AM | Reply with quote | #334 |
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Quote: Like Rob mentions partially masking the sound does help since it reduces the effective strength of the sound.
Have you tried facing your disaffections and thinking good thoughts. I've overcome misophonias that way. Changing how you respond to the sound is key. Maybe that's part of CBT, don't know but I'd like to learn more about that.
Hi John,
Yes, in CBT, we call it positive self talk. I have had success treating my social anxiety with CBT. It is very helpful for anxiety disorders.
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Rob
Registered: 05/02/05
Posts: 2,670
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| | 11/03/09 at 11:33 AM | Reply with quote | #335 |
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Good luck, maikaefer. I hope you find whatever is helpful to you. |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,594
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| | 11/03/09 at 05:08 PM | Reply with quote | #336 |
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Hi Darlene, (((( Smiles ))))
I'm happy for you that you have found a way to cope/function better with this condition in your life and it has helped you..
Thats what makes this board so helpful the fact that people can share with people who are going through a hard time with there situation's..
And what has helped them or whats out there that has helped others and just the search for the cure the cause where ever that may leads us it's all worthwhile..
Cognitive behavior therapy:
Counseling technique that helps people identify their unhealthy beliefs and expectations that might be prolonging unhappiness and other problems.
Cognitive therapy is used to help the tinnitus patient regard the tinnitus as unworthy attention..
As Dr Vernon & Barbara Sanders decribe it in their book..
Tinnitus Q & A- 2001
Plus other things written within on it in their book..
Plus other related titles on it..
Before my H got really really, bad early on..
I was seeing a behavioral therapist at my HMO because of my tinnitus problems didn't know what H was back then..
Thats when she wanted me eventually to join this tinnitus therapy group she had but the lights in her office and the train noise out her window was just awful so I declined her offer as it wasen't out working well for me.
Now I understand why of course but..
Eventually because of all the traveling tests ect ect...
My hyperacusis got really bad and I became very phonophobic..
I had to dig myself out of that pretty much by myself and I guess seeing her helped with that training, but it took sheer strength and will..
It was really hard to do..
And trying to believe beside the reality of it all based on the informations I did have back then, that people did get better/improve..
I had to try to get a grip on things, try to do sound therapies for H and calm myself at the same time.
It was very hard for me and it must be hard for you too, though different..
But it's something that needs to be done to try to help ones mental state of being though a very physical thing..
that "something went wrong" that brought theses symptoms on in the first place that we all have had to deal with in one way or another..
The first cause, whatever that may be and sometimes we can guess but we don't really know for sure..
Why us???
Not someone else under the same circumstances we see ourselves in and then we just try to deal with it anyway we can try to do so..
But yes...
I understand this too as with phonophobia for me..
It was overcomeing the overwhelming effects brought on because of our situations living it day to day hour to hour minute to minute untill we can find some relief and sometimes the only true relief, until we are better again...
Is through how we face it even if like for me back then..
Like you said :
Quote: It hasn't taken my problem away, but allows me to live a little more normal and have a little more control over my anger from the sounds
It was like this in the way it didn't take my hyperacusis symptoms away...
But it did help me in trying to cope and deal with the sounds..
Trying to tune it out in that way..
Glad your feeling more hopeful theses days..
Hope you get even better...
Try To Stay Well... (((( Smiles ))))
__________________
Take Care
Lynn |
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Gizmookie
Registered: 06/24/08
Posts: 313
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| | 11/03/09 at 11:09 PM | Reply with quote | #337 |
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Hi Lynn,
Thanks! I am very glad to have learned CBT from Rob. Even if it didn't solve my problem 100% it has taught me a lot. Not just with misophonia, but in daily life with my anxiety problems and OCD as well... especially OCD.
I think CBT is something that anyone with any problem should learn. It's not a "cure" so to speak, it's a way of managing and that is just what I needed. I still struggle every day and must continually work at it with my misophonia. But for my OCD and anxiety, it's comes really easily now. Two problems I can now manage without meds is a good thing. It may not work for everyone, but I think it's worth a shot. The problem with misophonia, anxiety, and OCD is that your mind doesn't stop obsessing about things. 'Runaway mind' as I call it. CBT interferes with that and allows you to take back control of your mind. Much easier for anxiety and OCD than with misophonia but I still try, and will keep on trying!
Now we just need research. I hope you are well. 
~Darlene
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Rob
Registered: 05/02/05
Posts: 2,670
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| | 11/03/09 at 11:54 PM | Reply with quote | #338 |
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Darlene -- It always makes me feel good to hear that our discussions about that were helpful to you. I was always planning to talk about it a little more thoroughly than we did, and regret that it was hard to find the time to do that in a way that would have done justice to what you were struggling with. Watching you in action as we talked it through (earlier in this thread), was inspiring to me. I agree with you that anyone struggling with the problem you and some others here deal with might find that some of the CBT techniques provide them with a means of managing the condition. As you say, it's worth a shot. I don't feel that you learned CBT from me. I'm not a psychotherapist and CBT is a type of psychotherapy. I was familiar with a number of CBT techniques as well as the theory of the cognitive model developed primarily by Aaron Beck which I studied in graduate school. I was also very familiar with some of the work of Judith Beck, as well as the application of CBT to manage tinnitus-related distress as described in two impressive books by Jane Henry and Peter Wilson. Folks on the board with hyperacusis and phonophobia may find it interesting that some clinicians in Europe use CBT to help their patients. Rob |
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LynnMcLaren
Registered: 04/28/05
Posts: 7,594
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| | 11/06/09 at 06:55 PM | Reply with quote | #339 |
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Hi Darlene, (((( Smiles ))))
I'm doing pretty good..
Hanging in there..
It's interesting as well as with a neurological disorder..
Most people with dystonia have anxiety as it talked about it in a recent newsletter on it.
Probably being related neurologically wise as they went into detail about it in findings but I don't have the newsletter in front of me now, it's somewhere.
May find it later...
But I have a very active mind myself always pondering and wondering at times about things myself.
It keeps you alert to whats going on in the world..
For sure...
I've had to work on things myself over the years with this, yet hyperacusis was a challenge indeed..
Not to mention tinntius..
But even though I was seeing that provider at my H.M.O because of my tinnitus or read Dr Vernons book..
I never was trained in CBT but new I had to pull myself together in some way to get through the hole I found myself in.
So I came up with a way to try to get through it before joining the H network so long ago and then recieved help on board and off board by others about how too get throught it as well..
Like on the job training a skill I had to perfect overtime..
A learning expirence.
It was hit and miss but had to try to calm myself and talk myself down.
It wasen't easy to do though and didn't effect the symptoms of H just helped me try to get through the expirence of H in some way..
Intact..
Though when you have lived with pain at times you kind of get numbed- use to pain being kind of normal..
But Hyperacusis was a painful expirence expecially at my worst of.
Pain is never fun..
But a fact of life at times..
Right now I'm looking into the link between "peripheral immune stimulation and immune excitotoxicty"..
Lots of reading to do on that..
I've been watching Dr Becker on TV & he has a calming effect on the viewers and a what can we try to do about this attitude..
I like that..
plus have been trying some of the things he has talked about myself..
For immune heath and brain health..
I think thats where things are at theses days..
Trying to have a healthy immune system and a better functioning brain neurologically wise..
And lots of good things may follow..
Because of the dystonia, hyperacusis expirence and tinnitus ect..
I this this is a good thing to do..
I feel postive about it reading and finding and doing as much that may help in that direction as I can..
And try to stay postive too as..
No matter how the health and state of being of this world is & that could get one down at time's the more one digs deeper..
It's not in the learning about it it's in the what can we do about it to try to help ourselves more better..
I have my up and downs but try to stay as positive as possible.. ((( Smiles )))
You too..
__________________
Take Care
Lynn |
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