Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Wow.. I am totally intrigued because this is one of the few things I have heard that makes total sense regarding what this condition " feels " like. It literally feels like he describes it.. it " feels " like the sound goes someplace in my brain and it illicits an emotional and nerve racking response! I mean literally, my nerves are just standing on end, so how can this be anything but related to something that has to do with the nervous system? I am hoping he can think of something that might help! Thank you so much for contacting him. Joan Vasquez Here is a nice email I got from Professor Moller-- I was not aware the misophonia was that common and that it could include so many common sounds. I can very well understand from a physiological view how it can occur - and it may not have anything to do with tinnitus, which would explain why treatments for tinnitus is ineffective. Instead misophonia must be caused by incorrect routing of the neural activity elicited by certain sounds. Since it is only certain sounds the incorrect routing must occur from a high cerebral cortical level. The incorrect target would most likely be somewhere in the " emotional brain " , probably a similar structure as the normal target for olfactory information, perhaps the central nucleus of the amygdala. These pathways are probably anatomically there in everybody but normally neural traffic is blocked by dormant synapses. How to treat the condition is a difficult question. Appropriate activation of neural plasticity would block the synapses in question, how to do that is not clear. Repeated activation could perhaps cause habituation and thus a decrease the problem, but unfortunately repeated exposure could also do the opposite by strengthening the synapses that connect auditory information to the wrong place in the brain. I have written books and articles about neural plasticity but never thought about misophonia because I thought it was a rare condition. I am on vacation now and I will think about what could possibly relieve these problem. Aage Moller Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 That's great that he's replied so constructively. Makes a change, doesn't it? Guy -----Original Message-----From: lsalin@...Sent: Tue, 16 Dec 2008 19:39:12 -0000To: soundsensitivity Subject: Dr moller a suggestion from Dr. MollerThe anatomical location of the problems seems to me to be the temporal lobe. Hyperactivity of the temporal lobe could promote opening of synapses that are normally dormant and thereby send information to other places than what is normal. I wonder if anybody have ever tried medications such as Dilantin (perhaps in a smaller dosage than used for treating epileptic seizures) or perhaps Topiramate. Dilantin has few side effects and it would be worth trying, you could perhaps get your general practitioner to write a prescription.Drugs that enhance inhibition such as benzodiazepines have probably been tried.Aage Moller Free Online Photosharing - Share your photos online with your friends and family! Visit http://www.inbox.com/photosharing to find out more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 So...? anyone with insurance who can try the Dilantin? Is there anyone on our list that already takes Dilantin for seizures and still has SS? That's great that he's replied so constructively. Makes a change, doesn't it? Guy Dr moller a suggestion from Dr. MollerThe anatomical location of the problems seems to me to be the temporal lobe. Hyperactivity of the temporal lobe could promote opening of synapses that are normally dormant and thereby send information to other places than what is normal. I wonder if anybody have ever tried medications such as Dilantin (perhaps in a smaller dosage than used for treating epileptic seizures) or perhaps Topiramate. Dilantin has few side effects and it would be worth trying, you could perhaps get your general practitioner to write a prescription.Drugs that enhance inhibition such as benzodiazepines have probably been tried.Aage Moller Free Online Photosharing - Share your photos online with your friends and family! Visit http://www.inbox.com/photosharing to find out more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Dear lsalin, I'm so impressed with the way you send of these letters to experts in this field and get speedy responses! How do you do that? It is very impressive. I confess to being a little jealous of that skill, I emailed Dr. Moller too, but, no reply yet. I'll let you know if I get one. But it is fantastic that he is engaging with us in such a helpful way. Meanwhile - in my mind you have the title of Head of Research and Liaison (expert health professionals) :-) My email asked him if he knew about the NIH study, and whether he felt he could add any support to ensuring that it gets up. So, fingers crossed. Ingrid. > > a suggestion from Dr. Moller > > The anatomical location of the problems seems to me to be the temporal > lobe. Hyperactivity of the temporal lobe could promote opening of > synapses that are normally dormant and thereby send information to > other places than what is normal. I wonder if anybody have ever tried > medications such as Dilantin (perhaps in a smaller dosage than used for > treating epileptic seizures) or perhaps Topiramate. Dilantin has few > side effects and it would be worth trying, you could perhaps get your > general practitioner to write a prescription. > > > Drugs that enhance inhibition such as benzodiazepines have probably > been tried. > > > Aage Moller > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 ---I am not really sure why he replied to my emails!! I know he is on vacation. I guess what I stated must have intrigued him and he had some times on his hands. I will talk to my psychiatrist about the Dilantin and show him Dr. Moller's notes to see if he thinks it would be helpful. My psych knows nothing about 4S but he does know how medications work and a lot about the brain function, etc. so maybe he will be helpful I am used to just being like the Energizer Bunny, I keep going and going until I get what I want. I have called and emailed and faxed Univ of Fl, I keep calling them every day until I got somebody on the phone. she PROMISED me the " big shot " doctor there would email me. If I see them I need information on what my referral needs to say, what tests I need, if my insurance covers it, etc.. THey are very busy and have a lot of call volume but I just keep on until I get a response. I have experience dealing with NIH, trust me, it is SLOW going. Research takes forever, it takes a ton of money and it takes years and years before it yields anything. Then you have to keep an eye on them, they have complete control over the research, who does it, how the money is spent or even misspent. Lots of red tape and I ain't holdin my breath waiting for the NIH to find us a good therapy. > > Dear lsalin, > > I'm so impressed with the way you send of these letters to experts in > this field and get speedy responses! How do you do that? It is very > impressive. > > I confess to being a little jealous of that skill, I emailed Dr. > Moller too, but, no reply yet. I'll let you know if I get one. But it > is fantastic that he is engaging with us in such a helpful way. > > Meanwhile - in my mind you have the title of > Head of Research and Liaison > (expert health professionals) > > :-) > > > My email asked him if he knew about the NIH study, and whether he felt > he could add any support to ensuring that it gets up. So, fingers crossed. > > Ingrid. > > > > > > > > > a suggestion from Dr. Moller > > > > The anatomical location of the problems seems to me to be the temporal > > lobe. Hyperactivity of the temporal lobe could promote opening of > > synapses that are normally dormant and thereby send information to > > other places than what is normal. I wonder if anybody have ever tried > > medications such as Dilantin (perhaps in a smaller dosage than used for > > treating epileptic seizures) or perhaps Topiramate. Dilantin has few > > side effects and it would be worth trying, you could perhaps get your > > general practitioner to write a prescription. > > > > > > Drugs that enhance inhibition such as benzodiazepines have probably > > been tried. > > > > > > Aage Moller > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 OK I like this guy. How nice of him to reply being on vacation! And the fact that he is going to put more thought into it is great. This isn't common, or more doctors would know about it which is why we need the study by the NIH. It's nice to have someone else think this is physiological instead of psychological. > > Here is a nice email I got from Professor Moller-- > I was not aware the misophonia was that common and that it could > include so many common sounds. I can very well understand from a > physiological view how it can occur - and it may not have anything to > do with tinnitus, which would explain why treatments for tinnitus is > ineffective. > > > Instead misophonia must be caused by incorrect routing of the neural > activity elicited by certain sounds. Since it is only certain sounds > the incorrect routing must occur from a high cerebral cortical > level. The incorrect target would most likely be somewhere in > the " emotional brain " , probably a similar structure as the normal > target for olfactory information, perhaps the central nucleus of the > amygdala. These pathways are probably anatomically there in everybody > but normally neural traffic is blocked by dormant synapses. > > > How to treat the condition is a difficult question. Appropriate > activation of neural plasticity would block the synapses in question, > how to do that is not clear. Repeated activation could perhaps cause > habituation and thus a decrease the problem, but unfortunately > repeated exposure could also do the opposite by strengthening the > synapses that connect auditory information to the wrong place in the > brain. > > > I have written books and articles about neural plasticity but never > thought about misophonia because I thought it was a rare condition. > > > I am on vacation now and I will think about what could possibly > relieve these problem. > > > Aage Moller > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. > > ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Moller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful > > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the " big shot " doctor there would email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response. > > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Darlene and ,I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything.I've noticed else where on this forum that patients who have contacted Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm just saying that for the sake of people with our symptoms it needs to be explored.So my questions isn't about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did?I acknowledge I am new to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their symptoms.Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. >> ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Moller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful> > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the "big shot" doctor there would email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response.> > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 I have not tried Dilantin but do take Depakote which is and anti- epileptic drug for my bipolar, they give us anti- epileptic drugs as mood stabilizers, has helped my mood swings but certainly not cured my 4S, sadly. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 So the Depakote is not in the family of benzodiazepines? And how does Depakote differ from Dilantin as far the effect it has on the brain? Anyone know? Joan I have not tried Dilantin but do take Depakote which is and anti- epileptic drug for my bipolar, they give us anti- epileptic drugs as mood stabilizers, has helped my mood swings but certainly not cured my 4S, sadly. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Nice email, looks like there are some bright minds on this one From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of lsalin Sent: Wednesday, 17 December 2008 6:08 AM To: Soundsensitivity Subject: Dr Moller Here is a nice email I got from Professor Moller-- I was not aware the misophonia was that common and that it could include so many common sounds. I can very well understand from a physiological view how it can occur - and it may not have anything to do with tinnitus, which would explain why treatments for tinnitus is ineffective. Instead misophonia must be caused by incorrect routing of the neural activity elicited by certain sounds. Since it is only certain sounds the incorrect routing must occur from a high cerebral cortical level. The incorrect target would most likely be somewhere in the " emotional brain " , probably a similar structure as the normal target for olfactory information, perhaps the central nucleus of the amygdala. These pathways are probably anatomically there in everybody but normally neural traffic is blocked by dormant synapses. How to treat the condition is a difficult question. Appropriate activation of neural plasticity would block the synapses in question, how to do that is not clear. Repeated activation could perhaps cause habituation and thus a decrease the problem, but unfortunately repeated exposure could also do the opposite by strengthening the synapses that connect auditory information to the wrong place in the brain. I have written books and articles about neural plasticity but never thought about misophonia because I thought it was a rare condition. I am on vacation now and I will think about what could possibly relieve these problem. Aage Moller Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Wednesday, 17 December 2008 1:18 PM To: Soundsensitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacted Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn't about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am new to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. > > ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful > > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the " big shot " doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response. > > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 INgrid, Pawel Jastreboff and I have spoken about 4S many many times. We see one another at conferences and I am very respectful of his work. His work lies in the areas of tinnitus and hyperacusis more than misophonia, a word he and another person made up to stand for Hatred or Strong dislike of sounds (all sounds). I contend that you folks have something different. Most of you like sound. Just not particular mostly softer sounds. Does not seem to fit misophonia to me for several reasons: 1) the above 2) his treatment of misphonia of 3 weeks rotating louder and louder music does not work for 4 S. Not at all. 3) based on 12 years now of clinical work with focus on 4S as well as Tinnitus, Hyperacusis, Misphonia, and Phonophobia. You see, we are on a search here for a new thinking about this problem and how to approach it. Marsha , AuD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Marsha, Thank you.I know you are really busy, (I'm on holidays now and will be away from my computer after Sunday),and I have read everything you write, with great interest. I what you are saying and it is like music to my ears because it is exactly what I suffer with. I've noted that you are respectful of Dr. Jabestroff's work, you posted that recently,and I would not assume that you were not respectful of it. But I guess I want to know what his feedback is to your observations? Would he be supportive of the NIH study do you think?I guess I'm just a bit impatient! But I realise you are an advocate for people like me. I was just hoping to find as many advocates as possible to try and speed things up, and also, I did think they might also push the NIH across the line if they were having any doubts about actually doing the study.I am very impressed by your work in every way, I would just like to see your observations be tested (not to test you) I'm only see that you have conducted yourself in a professional manner, but to test what can be done to help the people you have identified. LIke me.Actually I've just asked you a question on the other board. Obviously is doesn't need an urgent response, but if you could take a look at it I would be very interested in your reply.ThanksIngrid.INgrid, Pawel Jastreboff and I have spoken about 4S many many times. We see one another at conferences and I am very respectful of his work. His work lies in the areas of tinnitus and hyperacusis more than misophonia, a word he and another person made up to stand for Hatred or Strong dislike of sounds (all sounds).I contend that you folks have something different.Most of you like sound. Just not particular mostly softer sounds.Does not seem to fit misophonia to me for several reasons:1) the above2) his treatment of misphonia of 3 weeks rotating louder and louder music does not work for 4 S. Not at all.3) based on 12 years now of clinical work with focus on 4S as well as Tinnitus, Hyperacusis, Misphonia, and Phonophobia.You see, we are on a search here for a new thinking about this problem and how to approach it.Marsha , AuD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Hi ,Which survey are you thinking of? I set one survey up, (In a flurry of hope about the NIH study).It is here. http://ingridspielman.blogspot.com/But you might be thinking of a different survey. I might be able to help out if that's any use.Ingrid.Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid SpielmanSent: Wednesday, 17 December 2008 1:18 PMTo: Soundsensitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacted Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn't about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am new to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. >> ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful> > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the "big shot" doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response.> > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Thanks so much for your persistence! Dr. Moller's response sounds like one I've been praying that a doctor would say. Instead of just saying it is something that you need to "learn" to get over, he looks at as a possible physical malfunction within the brain which we've been saying all along. I'm very excited to have him be intrigued over this. Hopefully he will keep being more and more intrigued by it. Thank you for your work. Kathy Howe -----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of lsalinSent: Tuesday, December 16, 2008 7:46 PMTo: Soundsensitivity Subject: Re: Dr moller ---I am not really sure why he replied to my emails!! I know he is on vacation. I guess what I stated must have intrigued him and he had some times on his hands. I will talk to my psychiatrist about the Dilantin and show him Dr. Moller's notes to see if he thinks it would be helpful. My psych knows nothing about 4S but he does know how medications work and a lot about the brain function, etc. so maybe he will be helpfulI am used to just being like the Energizer Bunny, I keep going and going until I get what I want. I have called and emailed and faxed Univ of Fl, I keep calling them every day until I got somebody on the phone. she PROMISED me the "big shot" doctor there would email me. If I see them I need information on what my referral needs to say, what tests I need, if my insurance covers it, etc.. THey are very busy and have a lot of call volume but I just keep on until I get a response.I have experience dealing with NIH, trust me, it is SLOW going. Research takes forever, it takes a ton of money and it takes years and years before it yields anything. Then you have to keep an eye on them, they have complete control over the research, who does it, how the money is spent or even misspent. Lots of red tape and I ain't holdin my breath waiting for the NIH to find us a good therapy.>> Dear lsalin,> > I'm so impressed with the way you send of these letters to experts in> this field and get speedy responses! How do you do that? It is very> impressive.> > I confess to being a little jealous of that skill, I emailed Dr.> Moller too, but, no reply yet. I'll let you know if I get one. But it> is fantastic that he is engaging with us in such a helpful way.> > Meanwhile - in my mind you have the title of > Head of Research and Liaison > (expert health professionals) > > :-)> > > My email asked him if he knew about the NIH study, and whether he felt> he could add any support to ensuring that it gets up. So, fingers crossed.> > Ingrid.> > > > > > >> > a suggestion from Dr. Moller> > > > The anatomical location of the problems seems to me to be the temporal > > lobe. Hyperactivity of the temporal lobe could promote opening of > > synapses that are normally dormant and thereby send information to > > other places than what is normal. I wonder if anybody have ever tried > > medications such as Dilantin (perhaps in a smaller dosage than used for > > treating epileptic seizures) or perhaps Topiramate. Dilantin has few > > side effects and it would be worth trying, you could perhaps get your > > general practitioner to write a prescription.> > > > > > Drugs that enhance inhibition such as benzodiazepines have probably > > been tried.> > > > > > Aage Moller> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 No there was another one we were gong to run through this forum. Information such as ago sex culture when it first appeared triggers sounds control methods and methods that have helped etc, location treatments tried and a few others things. We have so much information but I cant see anywhere where we have stored this, please let me know if I am wrongl i know a while ago we were talking about putting it into access and . This is something I can do over the Christmas break if every one is comfortable. Maybe we can tag this type of poll onto the forum, that way it will b e easy to access. Does everyone agree with this? There were some posts before about “a few questions” that showed some interesting information maybe we could expand on that. I was thinking of a database holding all of our information in one central (possible forum or computer) place and then we could go from there, but it all depends if everyone is interested / comfortable with this idea. Please let me know your thoughts. Kindest Regards From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Wednesday, 17 December 2008 6:59 PM To: Soundsensitivity Subject: Re: Re: Dr moller Hi , Which survey are you thinking of? I set one survey up, (In a flurry of hope about the NIH study). It is here. http://ingridspielman.blogspot.com/ But you might be thinking of a different survey. I might be able to help out if that's any use. Ingrid. Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Wednesday, 17 December 2008 1:18 PM To: Soundsen sitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacte d Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn' t about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am ne w to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. On 17/12/2008, at 12:33 PM, Darlene wrote: you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. > > ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful > > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the " big shot " doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response. > > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi - I do not have seizures - I was on Dilantin for about 10 years as prescribed by a psychiatrist - it didn't help at all - I was much younger (approx 20 yrs ago) and often ate them like candy and they made no difference at all in 4S symptoms. I now take Clonazepam .5 mg 2Xday (generic Klonopin - also primarily for seizures) and it seems to take the edge off but it is certainly no cure. It is a narcotic: we need to be mindful of what we take when they offer it as a cure. Sorry to sound so negative but I must warn . . . I do urge you to try anything that seems viable but please keep your wits about you. (Clonazepam costs about $4/month at Costco but you have to see the doctor for the Rx) I count my haves vs my wants and make sure I see beauty everyday. It helps to keep from being swallowed up (no pun intended). Adah > > > > > > > That's great that he's replied so constructively. > > > > Makes a change, doesn't it? > > > > Guy > > > > > > * Dr moller > > > > a suggestion from Dr. Moller > > > > The anatomical location of the problems seems to me to be the temporal > > lobe. Hyperactivity of the temporal lobe could promote opening of > > synapses that are normally dormant and thereby send information to > > other places than what is normal. I wonder if anybody have ever tried > > medications such as Dilantin (perhaps in a smaller dosage than used for > > treating epileptic seizures) or perhaps Topiramate. Dilantin has few > > side effects and it would be worth trying, you could perhaps get your > > general practitioner to write a prescription. > > > > Drugs that enhance inhibition such as benzodiazepines have probably > > been tried. > > > > Aage Moller > > > > ------------------------------ > > Free Online Photosharing - Share your photos online with your friends and > > family! > > Visit http://www.inbox.com/photosharing to find out more! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 sounds good to me . I think it would be interesting to ask all sorts of questions just to see if there is any common link to us all. Plus, if it was in a central place where everyone could easily find it, especially new people, that would help. -- In Soundsensitivity , " McKenna " wrote: > > No there was another one we were gong to run through this forum. Information > such as ago sex culture when it first appeared triggers sounds control > methods and methods that have helped etc, location treatments tried and a > few others things. We have so much information but I cant see anywhere where > we have stored this, please let me know if I am wrongl i know a while ago we > were talking about putting it into access and . This is something I can do > over the Christmas break if every one is comfortable. > > > > Maybe we can tag this type of poll onto the forum, that way it will b e easy > to access. > > > > Does everyone agree with this? > > > > There were some posts before about " a few questions " that showed some > interesting information maybe we could expand on that. > > > > I was thinking of a database holding all of our information in one central > (possible forum or computer) place and then we could go from there, but it > all depends if everyone is interested / comfortable with this idea. Please > let me know your thoughts. > > > > Kindest Regards > > > > > > > > From: Soundsensitivity > [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman > Sent: Wednesday, 17 December 2008 6:59 PM > To: Soundsensitivity > Subject: Re: Re: Dr moller > > > > Hi , > > > > Which survey are you thinking of? I set one survey up, (In a flurry of hope > about the NIH study). > > It is here. http://ingridspielman.blogspot.com/ > > > > But you might be thinking of a different survey. I might be able to help out > if that's any use. > > > > Ingrid. > > > > > > > > > > > > > > Maybe once the forum develops a little more it will allow a lot of people to > access the information which at present they cant see on here..... Maybe > this is something we could look into . at least then it would be possible > for the body of research and information we are poking around in to be sent > to one place that they could look at > > > > Also on a aside note, what ended up happening with the survey we were going > to put together? > > > > R > > > > From: Soundsensitivity > [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman > Sent: Wednesday, 17 December 2008 1:18 PM > To: Soundsen sitivity > Subject: Re: Re: Dr moller > > > > Darlene and , > > > > I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has > ever commented on Dr. J's clinical findings. I've been looking around on the > web for that, but have not come across anything. > > > > I've noticed else where on this forum that patients who have contacte d > Jabestroff have been told that they have Misophonia and that there are > treatments for that which might help. This advise doesn't help most of us > right now, but in terms of the professional 'received wisdom' , it is true. > > > > > I am one of those people who thinks Dr. is noticing exactly what I > have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more > widely and tested to the point where it becomes the received wisdom, from > which treatment options can be explored; I guess there is a chance that the > observations made by Dr. won't instantly lead to a treatment, so I'm > jus t saying that for the sake of people with our symptoms it needs to be > explored. > > > > So my questions isn' t about Dr. s work, or about Dr. Jabestroff's > advice to patient enquirers, it is just about whether Dr. Jabestroff has > been made aware of Dr. 's work and whether he has made and comments > on that? > > Any not just Dr. Jabestroff, but other leaders in this area, how are they > responding to the findings. > > And my next question would be are they open minded about these findings, or > dismissing them. > > > > What I am angling at is do we think Dr. Jabestroff, and other could become > advocate for people like us? Would it be helpful if he did? > > > > I acknowledge I am ne w to all this, and probably naive especially to all > the politics around this stuff, but like everyone else here, I am looking > for ways forward, especially for people who are not getting any recovery > from their sympt oms. > > > > Ingrid. > > > > > > > > > > > > > you are awesome! You must be the energizer bunny! LOL. I too > am not banking on the NIH which is why I think it's very important > for all of us to continually search out new avenues and things to > try. I think it would be benificial if the NIH study does go through > to have people like Dr. J and Professor Moller on board. Do keep us > posted what you find out from your psychiatrist. > > > > > > ---I am not really sure why he replied to my emails!! I know he is > on > > vacation. I guess what I stated must have intrigued him and he had > > some times on his hands. I will talk to my psychiatrist about the > > Dilantin and show him Dr. Mo ller's notes to see if he thinks it > would > > be helpful. My psych knows nothing about 4S but he does know how > > medications work and a lot about the brain function, etc. so maybe > he > > will be helpful > > > > I am used to just being like the Energizer Bunny, I keep going and > > going until I get what I want. I have called and emailed and faxed > > Univ of Fl, I keep calling them every day until I got somebody on > the > > phone. she PROMISED me the " big shot " doctor there wo uld email me. > If > > I see them I need information on what my referral needs to say, > what > > tests I need, if my insurance covers it, etc.. THey are very busy > and > > have a lot of call volume but I just keep on until I get a response. > > > > I have experience dealing with NIH, trust me, it is SLOW going. > > Research takes forever, it takes a ton of money and it takes years > > and years before it yields anything. Then you have to keep an eye > on > > them, they have complete control over the research, who does it, > how > > the money is spent or even misspent. Lots of red tape and I ain't > > holdin my breath waiting for the NIH to find us a good therapy. > > > > > Quote Link to comment Share on other sites More sharing options...
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