Why Can't There Be Any Help in the Beginning?

[Marie79]

So I'm 7 weeks in and still in the freak out mode which I have found from here is very normal.

I live in LA and have gone to the LA support group, seen one of the top tinnitus audiologists, and 2nd audiologist and 2 top ENT's and a psychiatrist. EVERYONE says even with kind of a "oh honey so sorry" smile that I will just get used to it and maybe it will go away. honestly my psychiatrist was the best support so far but still he just said "oh yea I have it and I don't even notice anymore." At least he gave me some xanax but told me to take it as a last resort. He did give me another sleeping pill but I've been too scared to take it.

They do treat me and THANK GOD I had an established relationship with my psychiatrist because the others laughed when I asked for anything to help me sleep or cope through the night. They just all said I need to not think about it and not to go on any support group website.

Why can't there be any help for anyone in the beginning? EVERYONE in here says it's VERY normal for people to go through a terrible initial time period and there is literally no support. I went to the ER one night and they looked in my ear and gave me some antibiotics. I was a freaking mess. I still am.

Even at the LA support group there was no emotional support. The knowledge on T was good but for someone new freaking out? No. Nothing. Even the director just looked at me in this "oh honey" kind of way and said that we make a 5% problem feel like it's the end of the world. WTF? I'm glad you have come to that conclusion after your freaking TWENTY YEARS in this group. Forgive me if I'm just a few weeks in and upset. She never even returned my email asking for some help.

If I ever get through this I want help start some kind of beginning emotional support thing. I don't know. Just something besides "this will probably go away let's see and just don't think about it."

Even the top LA audiologist WHO HAS T HIMSELF told me not to go on this group or ANY support group and to just not think about the T. WTF?
Sorry I'm just angry. I think all these specialists and people have a good place in their heart from where they are coming from but I feel like they are just patting my head and smiling nicely and saying move along.

 

[glynis]

I totally agree that early support with talking therapy from someone trained in tinnitus would be really beneficial and help with all the unwanted emotions that hit hard at early onset of tinnitus.

This is a lovely supportive forum and between us all we can offer great support and swap stories of our Tinnitus journeys .

Stay strong we are all here for each other .
Support groups are great to go to if your lucky to be near one and can give one to one support to .....lots of love glynis

 

[Telis]

There's no real help at any point, I'm 2.5 years in and there is nothing concrete at all, just a shit ton of placebo treatments and weird shrinks to chat to. I would imagine that this will still be the same in 10 years. No help at the beginning, middle or the end. You are kinda on your own with tinnitus.

I think TT is a good thing, I'm not sure why the advise to stay away. I guess if you are driven by anxiety and freak out about reading about others with T, it may not be a good place to be. For me, I could be here, or not, I'm not influenced in that way. I didn't have anyone to talk to in the first 7 months, I didn't know about support forums, not being here was unhelpful, when I did arrive, I received a lot of advise and made a few friends, I think it can be pretty useful at times, especially when you feel alone.

If these "experts" advise staying away from support groups, I would imagine it's good to stay away from them as well?

 

[JonM]

Wow...I am glad I am not the only one...just got the ringing 2 weeks ago saw the ENT last friday and got no support other then...here are a list of vitamins....40 million in the US have this...good luck...and pushed me out the door.

Was an emotional wreck after that meeting. Started to do some searching and found this place. I am glad to at least read about this from people that are dealing with it. Sorry you are not getting any support either. I don't understand the mentality of that...there should be a system in place for when someone gets tinnitus here are the resources you need to help you out.

 

[Cheza]

They just all said I need to not think about it and not to go on any support group website.

What a dismissive and uninformed comment from those who should know better. I believe the Tinnitus Talk support forum has saved lives and it's definitely helped when no one else is there for us. Aside from the emotional support, the amount of useful information about tinnitus and how to cope with it is phenomenal.

 

[Steve]

I spoke to a few professionals at the TRI conference who said they had patients who were helped by TT. I thought that was pretty cool.

When you are in the early stages I think you need all the support you can get. It isn't good if you're reading horror stories so it needs to be helpful support.

You could rightly argue that at some point you are best to back away from it but it's all down to the individual. If you feel that you have to break free to get on with life then that's what you need to do, likewise if you want to stick around to help others then that's great. Either way it's about you understanding yourself and doing what's best for you.

 

[Zug]

I spoke to a few professionals at the TRI conference who said they had patients who were helped by TT. I thought that was pretty cool.

When you are in the early stages I think you need all the support you can get. It isn't good if you're reading horror stories so it needs to be helpful support.

You could rightly argue that at some point you are best to back away from it but it's all down to the individual. If you feel that you have to break free to get on with life then that's what you need to do, likewise if you want to stick around to help others then that's great. Either way it's about you understanding yourself and doing what's best for you.

I Know I did @Steve . Lots of good advice and support here. It was here that I read about CBT and decided to try it. Too bad the Doctor's Corner is slow nowadays.

I think most criticism applies here and in many other things in life: Don't overdo it.

 

[Zug]

So I'm 7 weeks in and still in the freak out mode which I have found from here is very normal.

I live in LA and have gone to the LA support group, seen one of the top tinnitus audiologists, and 2nd audiologist and 2 top ENT's and a psychiatrist. EVERYONE says even with kind of a "oh honey so sorry" smile that I will just get used to it and maybe it will go away. honestly my psychiatrist was the best support so far but still he just said "oh yea I have it and I don't even notice anymore." At least he gave me some xanax but told me to take it as a last resort. He did give me another sleeping pill but I've been too scared to take it.

They do treat me and THANK GOD I had an established relationship with my psychiatrist because the others laughed when I asked for anything to help me sleep or cope through the night. They just all said I need to not think about it and not to go on any support group website.

Why can't there be any help for anyone in the beginning? EVERYONE in here says it's VERY normal for people to go through a terrible initial time period and there is literally no support. I went to the ER one night and they looked in my ear and gave me some antibiotics. I was a freaking mess. I still am.

Even at the LA support group there was no emotional support. The knowledge on T was good but for someone new freaking out? No. Nothing. Even the director just looked at me in this "oh honey" kind of way and said that we make a 5% problem feel like it's the end of the world. WTF? I'm glad you have come to that conclusion after your freaking TWENTY YEARS in this group. Forgive me if I'm just a few weeks in and upset. She never even returned my email asking for some help.

If I ever get through this I want help start some kind of beginning emotional support thing. I don't know. Just something besides "this will probably go away let's see and just don't think about it."

Even the top LA audiologist WHO HAS T HIMSELF told me not to go on this group or ANY support group and to just not think about the T. WTF?
Sorry I'm just angry. I think all these specialists and people have a good place in their heart from where they are coming from but I feel like they are just patting my head and smiling nicely and saying move along.

I know a very good surgeon who hates talking to patients, not every doctor gets the humanistic approach. Talking to doctors can be very disheartening. I still can't believe that the first doctor whom I talked about Tinnitus asked about my religion and told me to pray for Jesus - I'm jewish. (I walked in the closest emergency room, not a very wise choice by my part either but I was desperate.)

But, I'm sorry to say, there is some true on trying to take your mind off T. Take a look at Dr. Hubbard's posts at the doctors corner.

Wish you get better! Until you do, there's some nice people and information in here.

 

[AlexSongitus]

I spoke to a few professionals at the TRI conference who said they had patients who were helped by TT. I thought that was pretty cool.

When you are in the early stages I think you need all the support you can get. It isn't good if you're reading horror stories so it needs to be helpful support.

You could rightly argue that at some point you are best to back away from it but it's all down to the individual. If you feel that you have to break free to get on with life then that's what you need to do, likewise if you want to stick around to help others then that's great. Either way it's about you understanding yourself and doing what's best for you.

If it wasn't for this forum I probably would have never heard of AM-101 or had the courage to go through with it. But it definitely comes down to the individual if you are here looking for support, help, or to give support and help, or looking to get sucked into a negative thought cycle. The success story threads, research and treatment threads, they are amazing. And for me it always helped to find others to either chat on the forum chat or exchange experiences.

Docs are paranoid that people have no common sense I guess. They still live under the umbrella that the net is nothing but filled with garbage, and if you rush and believe the first thing you read, it can lead you down the wrong path. But they highly underestimate the community's ability to scrutinize information as a whole and weed out the garbage. It may take time, and it takes careful, patient reading to get to the bottom of things, but I find communities in general are good at this. I also see it as a tool, and like with any tool, you have to know how to use it. And yeah with T, sometimes it can be a good thing to just get away and get your mind off of it.

 

[PaulBe]

I still can't believe that the first doctor whom I talked about Tinnitus asked about my religion and told me to pray for Jesus - I'm jewish.

CBT. Christian Behavioral Therapy?