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DrNagler
 #1 
Hi All -

One of our newest members, Maggie, sent me this post via e-mail instead of putting it up on the board herself.  I'm sure she'll get the hang of it shortly.  Welcome, Maggie!  smn

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Hi Dr Nagler and group!

I have read the posts on this site many times but this is my first time posting. I am so pleased and honored to be able to contact you for advice and from the rest of the group here.

I guess I have been having a difficult time recently and I am feeling hopeless and discouraged. I have had hearing loss (Otosclereosis)since 2006 and have been suffering from bad T for almost 7mths. I have tried many things over the past mths but I feel like I am getting nowhere.

I was on clonazepam (Ativan)which did bring down my noise but I decided to try weaning off b/c my usual dosage had stopped working and I was scared of becoming addicted and suffered horrible withdrawals which made my T worse. I tried going to hynotherapy but started having bad withdrawal from the Ativan and had to stop b/c I could not cope. Then I was put onto clonazepam which helped with withdrawals but only made my noises higher pitched and unbearable. I had a set back in chicago when I was exposed to loud train engines and did not have my hearing aids in and could not find my earplugs which exasperated my noise. Recently I have started Neuromonics but it only makes my noises worse and it takes days to recover. My neurologist says that I have type 4 reactive Tinnitus and sounds and music have always increased my noises which take a long time to come down. So I have stopped Neuromonics worried it will make things worse and have started listing to one of Petroffs CD via!

speakers trying to increase my listening time in 15 min intervals.

I listen with my hearing aids but at this point I figure it will take forever to habituate. I wanted to know if I should try generators but I am not sure how well I can hear. My TRT audiologist says that I can habituate with just hearing aids but I don't think thats enough. Especially when my noise just gets worse without them in. I have also considered coming off the clonazepam since its not helping with my T and is making me depressed, although it does help with anxiety and sleep. I have thought of Xanax but most Doctors here in Canada won't perscibe it and it scares me. I have started volunteering again but most of the time I feel like I am getting nowhere in my recovery. I also want to start CBT here but there does not seem to be anyone in Ontario that has experience with T

Sorry for the very long post, I would appreciate some direction, I just don't know what to do....

Maggie,

P.s I enjoy your recent posts on "words of Wisdom"

Micky
 #2 

Maggie, sorry to hear you are having a hard time right now , ..may i ask, how long did you use the Neuromonics unit for, before you realised it was making your tinnitus worse ? ..as you know, if it was for a short while then you would be in line for a refund ..i hope you are....ps i have a Neuromonics unit myself and have often wondered if it is  making matters worse ... Regards Micky ..

Maggie
 #3 
Hi Micky,

Thanks for your response.  Sorry guys I realized and was  going to do another post this morning .  Yes its within warrenty time, so I can return it and I used it for about a week and by the end my head was just roaring all the time. I However I find that the Petroff CD also makes my noise ramp up as my Tinnitus has always acted this way.  I am trying to use speakers right now and slowly trying to hopefully build up tollerance to the sound exposure.  Its strange a few days back I actually thought I was habuating again.  At times with my hear aids out, the noise after a while did not bother me as much.  I would just say to myself "its only sound." But recently its gotten bad again and I don't know why. Thanks, Glad to be here Dr Nagler....

Maggie
DrNagler
 #4 
Maggie, you listed a number of different treatment approaches in Post #1 of this thread.  Perhaps it would help if you stated in concrete terms what your goal is.  I know, we all want a cure.  But short of that, what is it specifically that you seek to accomplish?

smn
Maggie
 #5 
Hi Dr Nagler,

Thanks for your response.  As does everyone, I seek to accomplish habituation.  I realize that may mean different things to different people.  But my goal is to reach a point where I can accept my T and not be bothered by it.  That it will hopefully fade into the background, that I will be less aware of it and it will not bother me as much.  More "good ear days." 


Maggie
LetItOut
 #6 
Hi Maggie,

I live in Nova Scotia and recently I contacted my regional Mental Health department to see about some counseling for managing my Tinnitus (I specifically asked for someone with CBT experience), and they've scheduled me for a group course on Cognitive Behavior Therapy, I start Thursday.

The psychologist for the group admits they don't have much experience with T, but as he describes it, that once you learn the CBT concept it isn't hard to apply it our personal situations.

And the nice part is that it's covered by provincial healthcare :-)

It might be worth signing up anyway and seeing what you can do with it.

Best of luck.

Scott,
Maggie
 #7 
Hi Letitout,

Thanks for your response. Yes I have been looking into the same thing here in Toronto and am finding the same thing that most CBT therapists don't deal with tinnitus but depression and anxiety among other things.  But I too will try to seek out one anyways, I figure its better than nothing and free sounds really good to me.  
I am also seeking a new TRT audiologist since Neuromonics did not work. I am so sad that this board is closing...I finally found a good source for support and info. 

Maggie
Bbec
 #8 
Maggie- I find a lot of support on Dailystrength.org in the tinnitus group.
Maggie
 #9 
Hi Bbec,

Thanks, I will check it out.  I have been on the tinnitus  support mesg board and read some very positive success stories.  Are you a member?  I think the hypercusis network and mesg board would be a good resource also....


Maggie
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