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Tinnitus Clinic Visit


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#1 kiwimum03

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Posted 02 May 2007 - 09:37 PM

hi everyone,

I said I would keep you updated when I finally when to the Tinnitus Clinic.
Well I went this morning, and I should have known while I was stuck in traffic it was going to be a lousy day.
We ended up being 30mins late because of a traffic accident that stopped most of the lanes on the Motorway. I tried to ring the clinic but they had their phones on nightservice still, so I left a message, after calling 3 times.
They rang me on my mobile asking where I was, and I told them I was stuck in traffic and that I had tried to ring them and the girl realised she hadn't turned the clinics phones on for the morning, but made me feel bad still.

When I arrived, I got whisked away by two people who hastily introduced themselves and it wasn't until I sat down that I realised I was seeing them, NOT the specialist I was told I was going to see, who is mean't to be the best person for finding out WHY you have tinnitus.
For an hour I got asked all the same questions that I had ALREADY filled out on the questionnaire they had posted out to me earlier and gave to them.

They didn't read any of the notes about my medical history that I had brought with me.
I then had an auditory test, and a test to measure the pitch of my tinnitus
(which was probably the most positive part of the experience).

One of the people in the room kept mumbling that we probably wouldn't have time to do everything because I was late, so again I apologised, I felt soooo stink.

After they did the test, they said my hearing was perfect...........I knew that.
They said that I did have Tinnitus...........of course I knew that.
And that I was over sensitive to noise levels................I had already told them that.

I asked them what was causing my Tinnitus, they said they didn't know. It could be anything............what!
. This is why I came to this specialised Clinic, and waited 5 months to see the Specialist I was told I would see because he supposedly LOVES to find out what is causing your tinnitus. Grrrrrrrrrrrrrrr!
So then they told me that perhaps I had better look after my health better, make some dietary changes (they should have just told me I was fat, I know I am) then perhaps what is causing my tinnitus would go away.

Either that, or for $5000, yes $5000. I could have a specialised treatment, which consists of an special ipod loaded with special noises(they put into it) to retrain my brain to ignore the tinnitus. I have heard of this but I would rather find out what is causing my Tinnitus first.
I then realised that when the Audiologist said that he also worked for a particular company, he worked for the company that is producing this special treatment. I didn't quite click when I first met him.

The other woman there, then proceeded to tell me that I wasn't upfront with all my medical information, and that I told them important things at the end of the conversation.
I then told her that I had typed up a history for them because my memory is so bad, and I told them that at the begining.
She then told me that since I was late they hadn't read it .................!!!!!!!!! Again I apologise, but thinking I should really stop apologising.

My husband was looking at me sideways........he was mad. Again they mentioned me making lifestyle changes and looking after my health better.
What do they think I am doing!
I know I am overweight and sometimes I think people just take one look at you and judge.

they didn't take the time to know I am on Prednisone (if they had only read my notes) I may have Cushings, both of which can make you put on weight even though you eat a balanced diet.

I do try and exercise, but as you all know fatigue and pain are a killer on that. But I do do my best. But they weren't interested. they didn't seem to have any medical knowledge at all.
I can understand them only focusing on their own area of expertise, but if they didn't understand something, or my illness they should ask me to explain.

they just did alot of talking, and I sat there feeling stupid.

Okay I have rattled on long enough.

Good news, my ears are perfect, hurray! bad news, I still have tinnitus and nystagmus (which apparently according to that woman is VERY common....what!!!, I don't know many people with nystagmus)

So I am going to go on a diet and fix all my health problems and magically my tinnitus is going to go away.
don't worry I won't be bitter for long, tomorrow is a new day, I just needed to vent.

hugs,
Irene

#2 LisaBulman

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Posted 03 May 2007 - 01:23 AM

Hi Irene,
I am so sorry you had such a lousy day! Traffic alone will do it but then to be last for your appointment and have them make you feel bad is just horrible. You wait for 5 months then get no answers. I have tinnitus but have never tried to figure out why. I just think I don't want to know! My daughter has it and they found that she has a condition with her brain that is causing it.



Hugs,
Lisa
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#3 Heidi

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Posted 03 May 2007 - 02:57 AM

Hi Irene,

I am so sorry you had such a rough day yesterday and the appointment was not at all what you expected. How frustrating! Did you ask why you weren't seeing the person you thought you had set the appointment with? Any chance of getting in to see him since he seems to be the diagnostician of the group?

I sure hope things are looking up for you today! I am sending you lots of positive thoughts.

Warm wishes,
Heidi

#4 Sweet

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Posted 03 May 2007 - 04:02 AM

Oh Irene!

What a nightmare of a day!!!! This is the subject that gets me so hot under the collar (if I were wearing one) :) Why on earth should a patient apologize for anything when you received the treatment that you did??? grrrrrrrrrrrrrr is right! You should have given them a piece of YOUR mind since you were not seeing the person you thought you were......oh man, I am so sorry.

Amazing - here you go and pay for help, they belittle you, don't give you the answer you need, and YOU end up sitting there feeling stupid?? If you didn't live so far away I would re-make the appointment for you and go as your advocate. Trust me, you'd get want you needed. :)

I may be over that way in a year - make an appointment now and we'll handle this. :D
Warm and gentle hugs,

Pamela
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#5 emmie

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Posted 03 May 2007 - 02:52 PM

Irene,

I'm so sorry you had one of those stinky appointments...we hate those with a passion!!!

I'm just hoping that the "diet" you come up with that "cures" your tinnitus also cures every ailment of everyone on this site! You'll be rich and famous. We will all come to see you and bring you fabulous gifts! It will be a most wonderful reunion.

Seriously, take care, Irene. I hope you can get something figured out to get some relief.

xoxo emmie

#6 WestCoast1

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Posted 03 May 2007 - 03:26 PM

Irene,
Sounds like quite a day. It is such a bummber that you didn't recieve the care that you had diserved, and waited all that time for!

You were intitled to a good vent! I hope that the rest of your week goes better. I do think that some things happen for a reason....so maybe there will still be some good that comes from this bad experience...if not, at least you know that you won't be going back there again.

Hugs~
*WestCoast*

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#7 kiwimum03

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Posted 03 May 2007 - 03:43 PM

Hi everyone,

thank you SO MUCH for your supportive replies. For a while I thought I was over-reacting, but now after talking to people I realised I am not.
Give me another day and I will get over it.

Pam, you crack me up.........yeeehawww, come on down here and tell them what for, I would love it. I am probably a bit too timid and naive, and never realise until the last minute that people are being rude to me (usually because there is no reason why they should be).
Seriously, come down here, you'd love NZ!

Don't get me wrong, we do have some wonderful doctors here, and I have a couple of other specialists I see who are lovely, but for some reason, the new ones I see, seem to be stinkers lately.

Heidi, you know I never did ask about why I didn't see the specialist I was supposed to see. I kind of got rushed in, and felt bad about being late, that I kind of just went with the flow, and because I felt so bad by the end of it, I didn't even want to ask. I felt quite beaten down (which is probably a bit of an extreme emotion) but when your tired and sore, everything is just too much somedays.

Lisa, I am sorry your daughter has a condition with her brain which causes her Tinnitus. Some days I don't want to know what is causing mine either, but when I get my dizzy spells and headaches, I do start to worry. I guess my next step is a Neurologist. I do hope your daughter is doing okay.

Emmie................ha!!! "Roll-up, roll-up, get your cure all diet plan, only $5000, guaranteed to fix all your ailments!"..........I'll be rich in a giff!

You guys have made me feel so much better, thank you so much :)

big hugs,
Irene

#8 kiwimum03

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Posted 03 May 2007 - 03:56 PM

Thanks Erin,

It is good to try and make a positive out of a bad, I must remember that.

Hugs,
Irene

#9 Sweet

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Posted 03 May 2007 - 05:11 PM

Irene,

Seriously my son and his wife (who is a kiwi) are moving there next spring. All of her family is there. I'm trying to think of the town....Hastings?? Hawks Bay??? hmmmm my brain isn't working.

Anyway, who knows we may meet as I plan on visiting every 6 months. My son and I are very close and of course he has given me two grandbabies that I am very close to. I have them all the time.

:)
Warm and gentle hugs,

Pamela
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#10 Guest_Sherrill_*

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Posted 03 May 2007 - 06:18 PM

Oh dear Irene!!

Write that day off! Tomorrow's another day. I hate days like that, particularly when it's one thing after another.

I heard about the bad accident on the motorway, but never thought you'd be stuck in the line! Apparently a big truck and trailer unit rolled right in rush hour traffic! What a headache for the traffic police! They said the jam stretched for miles!

I've given up trying to find out anything about my tinnitus now. I've had it for well over 30 years now, and I can honestly say I hardly notice it now, as I'm so used to it. It started with Meniere's Disease in my early twenties, and I HATED it then, but there was nothing could be done, so over time I grew to accept it. With me they said it was probably damage to the hearing nerve.

I've been deaf in one ear for most of the time I've had the tinnitus, so my hearing is NOT alright. Also unfortunately, when I had my 5 episodes of peritonitis (due to my peritoneal dialysis), I had to have Gentamycin as one of the antibiotics. This med is known to interfere with hearing, and many people have hearing problems because of it. It gave me tinnitus in the other ear also, and my hearing deteriorated too. I hope I don't need it again!!

I wonder if you have had to take any meds in the past which have given you ear problems? I believe there's more than one which can do that.

Over the years with my sclero I have learned to be more assertive with the medical profession. It's not easy, but we have to stand up for ourselves. Like don't apologize too much. Once is enough, and if they keep moaning, well tough! It wasn't your fault you were late, and say so!

Pam, have you ever been to NZ? It's said that we have a little bit of everything regarding scenery etc. We're also told that we're friendly sorts down here! I agree with Irene, I think you'll like it. Hawkes Bay is correct, and Hastings is a city in that province.

Warm hugs,

#11 kiwimum03

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Posted 04 May 2007 - 01:11 AM

Pam,

I am sure your going to LOVE New Zealand, Hawkes Bay is wine country isn't it Sherrill?

Hastings is about a 5 hour drive from where I live, I have never been there but hear it is lovely. You are going to miss those grandbabies I am sure!


Sherrill,
the accident on the motorway was pretty bad I think. By the time I got passed it it was cleared but you could see the damage to the barrier, they were pretty lucky it was there to stop them going over.


I guess I will have to learn to live with my Tinnitus. I think my reason for finding out what is causing it is that I worry its something awful like a tumor, which realistically would be VERY rare, and I would probably have some more severe symptoms, but if they did check it out and said, hey just live with it then I think I would be happy.

I am definately going to be more assertive........my husband keeps telling me that too, that I am too timid and don't want to offend anyone, but then I never get what I want. It takes a while to change, but I am getting there.
The little knock backs are making me tougher.

You mentioned meds that cause ear problems, and funnily enough they asked me if I had ever taken anti-malaria drugs, and I said yes, I am on Plaquenil. They had never heard of it and got me to spell it.
But since I have only been on it for a wee while, it hasn't triggered my tinnitus. They didn't know it was used for arthritis, they just thought I had been to a malaria prone country........kind of made me laugh.

well off to bed, I have a cough and have been dizzy all day, sleep is calling.

I hope you are doing well,

Big hugs,
Irene

#12 Sweet

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Posted 04 May 2007 - 04:45 AM

Hi Irene and Sherrill,

I've never been to NZ, but obviously it's going to be a second home for me for awhile. As the time nears we'll have to talk more. It would be a shame to go all that way and not be able to meet you both!
Warm and gentle hugs,

Pamela
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#13 CraigR

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Posted 04 May 2007 - 05:33 AM

Very interesting that Plaquenil was mentioned regarding tinnitus. I have tinnitus that came on while I was taking Plaquenil for CREST. I can't think of anything else that could have caused it, as I haven't been exposed to loud sounds. There is also a high-frequency hearing loss.

I also have become accustomed to it. At first I thought it would drive me crazy. I can go days at a time without even noticing it, but it is quite obvious if I think about it.

Craig

#14 kiwimum03

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Posted 05 May 2007 - 11:33 AM

Hi Craig,

I am so pleased that your tinnitus has become not so bothersome, I do hope that I will become accustomed to it too.

Hugs,
Irene