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Yasmin

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Posts: 90
Reply with quote  #1 

Dear All...

 

I just read a post where a member - Jason's life came to an end late last year. I know I am a new member but I feel so sad and hurt to know that hypercusis drove him to this. I didn't want to write what I say here on that thread as it is inappropriate, but right now I feel sad but also very angry.

 

Reading that post hurt because we all know how hard it is to live with hypercusis and tinnitus and the severe pain which makes you contemplate such thoughts.  It made me relive how I too on several ocassions almost reached that point of praying that I would fall asleep and not wake up to face another day. Being a God believing person I put trust in the Lord to take my life when he wills and held on to the love of my family and friends, but to sit there and to seriously contemplate taking your own life is not easy and breaks your spirit to know that you are even thinking such thoughts.

 

Please... to anyone on this network who is feeling like that, please know that many people love you, the world is beautiful because of you.  Sometimes, certain things happen to us in life which can make it seem dark and lonely, but there is strength and comfort to be found if you believe and know that you are part of the reason why our world is alive. Your spirit is like that one in billion stars which shine to make our nights shine with beauty.  Don't let hypercusis take away your light from our sky.

 

I don't know the background into Jason's experiences with living with hyperacusis and tinnitus, but I wouldn't be surprised to learn that a guiding factor into what finally took him to that point was the lack of sympathetic doctors.  This is why I feel angry right now, reliving my own experience of having to deal with doctors. Because it was one in particular which almost sent me over the edge. She may not know how much of factor she played in me wanting to give in and call it a day.  If doctors only knew how hard it is live with hyperacusis/tinnitus they wouldn't be so cold and simply clinical. An inappropriate comment or a display of impatience and a lack of empathy can be that little push which does send someone over the edge.

 

My first experience with a specialist was a neurologist, Dr. Charlotte - she was wonderful and dealt with me in such a sympathetic way, explaining in detail what was wrong with me, and assuring me I was losing my mind that what I had was a known condition with others like me. I left knowing I wasn't a freak bound for the asylum.  She even wrote to me telling me what I had so I could do my own research as at the time of the consultation she didn't know the exact name for the condition but she knew of it and its symptoms - she termed it as 'auditory hyperstimulation syndrome'. She was a God-send. After meeting with her I felt a little more positive despite the hardship of dealing with h&t.  That was until I had my next consultation several weeks later with an audiologist - who was apparently one of the few specialists in the UK who was working and studying this auditory phenomenon - what a complete contrast to the first doctor I had seen. Although I knew I had a condition known to the medical world, I was still very much confused, in pain, distressed and desperate for to know more so I could comprehend what was happening and still at this time having terrible thoughts of ending it all. 

 

Whether doctors realise it or not, but the difference between a doctor and a very good doctor is an ability to show your patients that you really do 'care' about their well-being both physically and emotionally.  When I reflect on this particular doctor, I sometimes wonder whether she knowing that hypercusis sufferers question their own sanity before knowing what's really wrong with them used that awareness to make a unappropriate comment designed to make me question my sanity.  Was she being spiteful I often think now, wanting me to go home and question whether I was "bonkers" (her terminology). This doctor was very cold, displayed an impatience and even literally ordered me to stop hearing the sounds around me.  Didn't explain how one might be able to deal with what was happening or tell me anything about this condition, but to "stop it". Like a parent getting angry and aggitated at their child to stop being naughty. I left feeling completely hopeless and spent that night seriously thinking about giving up and taking a hammer to my head to smash it in.  But I never, because thankfully I had previously met with a doctor who gave me hope and a light to see, but I often think, if my first encounter with a specialist had been with that second doctor I would not be here today talking with you now. 

 

This is why it is so very very important that hyperacusis sufferers are treated and met with sympathetic doctors, because I fear if not, sadly members like Jason will be pushed over the edge.

 

Sorry for writing such a long post...

With love

Yasmin


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lib

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Posts: 272
Reply with quote  #2 

yasmin....you are so right.

my dr. sismanis and dr. poe are very sympathetic, as well as encouraging. they hugged me, told me they were rooting for me, and told me to have hope. these drs were the reason i made it so far and will continue on....they turned out to be my heros and my gaurdian angels.

lib

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Yasmin

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Posts: 90
Reply with quote  #3 

Hi Lib,

 

It's true, it's like everything in life, some are good parents some are not, some are good teachers, some are not...just like doctors, I feel sorry for the hyperacusis patient who comes across a doctor who has no compassion or warmth, and hope they are lucky enough to find a sympathetic doctor.  It's also funny, that the best doctors I have seen have all been neurologists. I have seen 3 in total to date and every single one of them was wonderful. I have also seen 3 audiologist to date and only one was great. Maybe because he himself not only the main professor in this field in the UK but also himself had an hearing issue (not sure what kind) and probably could easily empathise with the patient more than one who didn't have a hearing issue (as they say - those who feel it know it!).  Sadly he retired very soon after seeing me.

 

Has anyone else noticed the difference between neurologists and audiologists?  I have personally noticed that neurologists seem to address hyperacusis from different points of views and demonstrate a genuine belief in the patient's accounts and experiences, whereas audiologists tend to be very dismissive.  Maybe it's just my experience but would be curious to know others accounts on how the two different fields deal with hyperacusis.

 

And I made a typo error in my first post, the sympathetic Dr. Charlotte did not say I was losing my mind, as I typed in first post, but assured me I wasn't losing my mind and this condition was known (not completely understood but nonetheless known).

 

Today, I still have not been assigned a one to one doctor and still being past around audiologists and neurologists. I have to see another audiologist in a few days and another 2 neurologist again soon. They can make you feel like a guinea pig sometimes (smile).

 


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