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Vitamin

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Reply with quote  #1 
I am looking for Scandinavian hyperacusis sufferers or at least somewhere fairly close like Europe are there any on this forum?
I have hyperacusis myself and live in Sweden.
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remember

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Reply with quote  #2 
Hi Vitamin. Search Hyperacusis Sufferers group from Facebook, there are over 1000 member and many from Sweden.
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Vitamin

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Reply with quote  #3 
I don't use Facebook but I guess I have to register an account now so I can check this out thank you [smile]
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Johnloudb

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Reply with quote  #4 
If you want a positive and helpful Facebook group, look up the Hyperacusis and Tinnitus Support group. Quite a few Dutch members there including the moderators.
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Vitamin

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Reply with quote  #5 
Quote:
Originally Posted by remember
Hi Vitamin. Search Hyperacusis Sufferers group from Facebook, there are over 1000 member and many from Sweden.


I think the "very smart" mod blocked me from the group Hyperacusis Sufferers just because i tried to join from my new Facebook page which doesn't have any friends or a photo, they probably assumed that I was someone how isn't serious but I am I really want to join and get in touch with others so it really pisses me off that they just assume and don't bother to ask. Who is the mod of this group? I want to talk to that person!

( I found the person who started the group and sent her a message so I hope it will work out now, I will update and tell you guys how it went.)
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Johnloudb

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Reply with quote  #6 
Quote:
Originally Posted by Vitamin
Quote:
Originally Posted by remember
Hi Vitamin. Search Hyperacusis Sufferers group from Facebook, there are over 1000 member and many from Sweden.


I think the "very smart" mod blocked me from the group Hyperacusis Sufferers just because i tried to join from my new Facebook page which doesn't have any friends or a photo, they probably assumed that I was someone how isn't serious but I am I really want to join and get in touch with others so it really pisses me off that they just assume and don't bother to ask. Who is the mod of this group? I want to talk to that person!

( I found the person who started the group and sent her a message so I hope it will work out now, I will update and tell you guys how it went.)


Best to stay away from the sufferers group if you want to get better and make progress. It is a negative group ... Discourages talk of TRT. I know people who have been blocked by the mods just for trying to be helpful and talking about TRT. The group I mentioned above is very nice group of people, with lots of experience, and lots of success stories.
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Vitamin

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Reply with quote  #7 
I see it is quite annoying when people act like tools as soon as they get a little power over something.

I will give this group a chance though if they unblock me because it is the members I want to get to know not the mod, but I will try the one you mentioned as well, thank you btw.
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remember

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Posts: 85
Reply with quote  #8 
Quote:
Originally Posted by Johnloudb
Quote:
Originally Posted by Vitamin
Quote:
Originally Posted by remember
Hi Vitamin. Search Hyperacusis Sufferers group from Facebook, there are over 1000 member and many from Sweden.
I think the "very smart" mod blocked me from the group Hyperacusis Sufferers just because i tried to join from my new Facebook page which doesn't have any friends or a photo, they probably assumed that I was someone how isn't serious but I am I really want to join and get in touch with others so it really pisses me off that they just assume and don't bother to ask. Who is the mod of this group? I want to talk to that person! ( I found the person who started the group and sent her a message so I hope it will work out now, I will update and tell you guys how it went.)
Best to stay away from the sufferers group if you want to get better and make progress. It is a negative group ... Discourages talk of TRT. I know people who have been blocked by the mods just for trying to be helpful and talking about TRT. The group I mentioned above is very nice group of people, with lots of experience, and lots of success stories.


I have been member about a year now and I cannot say that it is a negative group. It is a group that "sees" farther and supports research programs that will eventually find a cure to hyperacusis. People also support each others there. I have talked about TRT in that group and I have not had any problems. I have said there that everybody with H should do TRT to see if it is helpful or not.

However they do not support the almost religious like talk about TRT what many have seen.
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Vitamin

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Posts: 12
Reply with quote  #9 
Quote:
Originally Posted by remember
Quote:
Originally Posted by Johnloudb
Quote:
Originally Posted by Vitamin
Quote:
Originally Posted by remember
Hi Vitamin. Search Hyperacusis Sufferers group from Facebook, there are over 1000 member and many from Sweden.
I think the "very smart" mod blocked me from the group Hyperacusis Sufferers just because i tried to join from my new Facebook page which doesn't have any friends or a photo, they probably assumed that I was someone how isn't serious but I am I really want to join and get in touch with others so it really pisses me off that they just assume and don't bother to ask. Who is the mod of this group? I want to talk to that person! ( I found the person who started the group and sent her a message so I hope it will work out now, I will update and tell you guys how it went.)
Best to stay away from the sufferers group if you want to get better and make progress. It is a negative group ... Discourages talk of TRT. I know people who have been blocked by the mods just for trying to be helpful and talking about TRT. The group I mentioned above is very nice group of people, with lots of experience, and lots of success stories.


I have been member about a year now and I cannot say that it is a negative group. It is a group that "sees" farther and supports research programs that will eventually find a cure to hyperacusis. People also support each others there. I have talked about TRT in that group and I have not had any problems. I have said there that everybody with H should do TRT to see if it is helpful or not.

However they do not support the almost religious like talk about TRT what many have seen.


Well I would like to join especially since my hyperacusis isn't the kind that can be cured with TRT but the faking mod blocked me so no I have no way to join. If you are a member then maybe you could talk to them? I haven't done anything to deserve to be blocked I just tried to join the group and they blocked me.
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remember

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Posts: 85
Reply with quote  #10 
Vitamin, send me your facebook name to my personal messages and I try to do something [smile] 
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Johnloudb

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Posts: 1,951
Reply with quote  #11 
There is a lot of negative counseling in the sufferers group, it hurts people, especially new comers. That's why some left that group and formed a new group. And those that I know, went on to make very good progress at increasing their tolerances. The mods at suferers have even said things like TRT being a hoax, and that no one has gotten better through sound therapy. Pretty sad!

No religious zealots here ... Just that some of us know how desensitization works and have made good progress.

As far as a cure, what would that look like? You think that will happen in our lifetimes?

I'm all for learning and knowledge ... But why should some suffer when they don't have to? I learned first hand the damage ignorance about a health condition can cause.

I feel for those with neurological damage and can't improve their tolerances. But that's not most people. Most everyone that have contacted me for help have made good progress, after given some helpful advice. There answers out there, despite what some may think.
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remember

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Posts: 85
Reply with quote  #12 

Quote:
Originally Posted by Johnloudb
There is a lot of negative counseling in the sufferers group, it hurts people, especially new comers. That's why some left that group and formed a new group. And those that I know, went on to make very good progress at increasing their tolerances. The mods at suferers have even said things like TRT being a hoax, and that no one has gotten better through sound therapy. Pretty sad! No religious zealots here ... Just that some of us know how desensitization works and have made good progress. As far as a cure, what would that look like? You think that will happen in our lifetimes? I'm all for learning and knowledge ... But why should some suffer when they don't have to? I learned first hand the damage ignorance about a health condition can cause. I feel for those with neurological damage and can't improve their tolerances. But that's not most people. Most everyone that have contacted me for help have made good progress, after given some helpful advice. There answers out there, despite what some may think.

Yeah, like I said everybody should try and do TRT. It's the only way to find out does it have effect or not. We all are different. 

Nobody can tell right now what the cure would look like. My personal opinion is that it is some kind of gene therapy or similar that restores the cells that might have been damaged. Or it might be only some kind of drug that affects to the recently found pain sensors in inner ear or in the brain. Who knows.    

Like always with science, the breakthrough can happen fast or with the time, but I am sure that it will happen. Many of us are young and there is a change that they find it in our lifetime. It might even happen in near future? Who knows.  

One thing is sure we have to keep supporting the researchers. 

    

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Vitamin

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Posts: 12
Reply with quote  #13 
Quote:
Originally Posted by remember
Vitamin, send me your facebook name to my personal messages and I try to do something [smile] 


I was going to link to my Facebook page but I can't get my id maybe cause I use my mobile? Anyway I can't find how to send pm's on this site either so I'm just going to post here instead
My Facebook name is Mathias Holmquist
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Vitamin

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Posts: 12
Reply with quote  #14 
Hey remember, why did you remove your post? It was the right person right because I sent her a long message explaining everything.
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dylan

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Reply with quote  #15 
Posts using a person's full name are not permitted here.  See rule number 4.  
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Vitamin

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Posts: 12
Reply with quote  #16 
Quote:
Originally Posted by dylan
Posts using a person's full name are not permitted here.  See rule number 4.  


That is fine, but why was our last two posts deleted? There were no names in those.
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dylan

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Posts: 139
Reply with quote  #17 
Vitamin, please read the rules at the bottom of the page. The posts were deleted because they did not comply with the rules.  
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Vitamin

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Posts: 12
Reply with quote  #18 
Update regarding my application to join hyperacusis sufferers on Facebook.
Even though I sent a long message to the mod "copy below" they will not even reply to me or anything, I guess they really are not very good people, I mean it is supposed to be a support group not some elite exclusive a-hols only group...
------------------------------
Please read this whole message.
Hello I was blocked from the group hyperacusis sufferers very unfairly before I even became a member. I do not usually use Facebook but I revived a tips about this group on the website the hyperacusis network so I created a Facebook page and submitted a request to join but instead someone blocked me from the group, I guess because they might have thought that it was a fake account which it is not. So could you please unblock me and let me join? I really want to get in touch with other people with this condition so it made me angry and sad when I was blocked.
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remember

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Posts: 85
Reply with quote  #19 
Quote:
Originally Posted by Vitamin
Update regarding my application to join hyperacusis sufferers on Facebook. Even though I sent a long message to the mod "copy below" they will not even reply to me or anything, I guess they really are not very good people, I mean it is supposed to be a support group not some elite exclusive a-hols only group... ------------------------------ Please read this whole message. Hello I was blocked from the group hyperacusis sufferers very unfairly before I even became a member. I do not usually use Facebook but I revived a tips about this group on the website the hyperacusis network so I created a Facebook page and submitted a request to join but instead someone blocked me from the group, I guess because they might have thought that it was a fake account which it is not. So could you please unblock me and let me join? I really want to get in touch with other people with this condition so it made me angry and sad when I was blocked.

There have been troublemakers and that is why they are extra cautious. All I can say is that put your face photo to your facebook page and add your friends there too and try again later. 
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Vitamin

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Posts: 12
Reply with quote  #20 
Quote:
Originally Posted by remember
There have been troublemakers and that is why they are extra cautious. All I can say is that put your face photo to your facebook page and add your friends there too and try again later. 


I prefer to have a bit of anonymity since I feel more comfortable discussing openly and honest about my condition then. I will just give up on that club instead there are many others anyway.
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remember

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Posts: 85
Reply with quote  #21 
Quote:
Originally Posted by Vitamin
Quote:
Originally Posted by remember
There have been troublemakers and that is why they are extra cautious. All I can say is that put your face photo to your facebook page and add your friends there too and try again later. 
I prefer to have a bit of anonymity since I feel more comfortable discussing openly and honest about my condition then. I will just give up on that club instead there are many others anyway.

Ok, I understand. That group is also a closed group so that your friends will not know that you are a member.
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Vitamin

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Posts: 12
Reply with quote  #22 
Quote:
Originally Posted by remember
Quote:
Originally Posted by Vitamin
Quote:
Originally Posted by remember
There have been troublemakers and that is why they are extra cautious. All I can say is that put your face photo to your facebook page and add your friends there too and try again later. 
I prefer to have a bit of anonymity since I feel more comfortable discussing openly and honest about my condition then. I will just give up on that club instead there are many others anyway.

Ok, I understand. That group is also a closed group so that your friends will not know that you are a member.


If you want to you can talk on FB you got my username. Since pm doesn't seem to work here, or it it just for me?
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