Ear Ringing

Ive got a high pitched ear rining for a while now its faint. i dont realli notice it much but shound i be worried? could this be easily treaded? like i doesnt keep me up from sleeping or anything.

Tyson,

Ringing in the ear is usually related desferal.  You should speak with your hematologist, he/she may take away desferal for a short time (usually a few weeks) and then you can resume desferal again.  You should not ignore this ringing because you don't want to risk damage to your hearing. 

Sharmin

Sharmin,
I have had the ringing for over 6 months and have approached my GP as I was worried. His reply was turn the radio up. Talk about dumb. I have even approached a few haematologist as I hadn't seen mine for awhile and they sort of dismissed it when I  asked if the desferal could be doing it. Now I'm really upset. There are times when the ringing is loud and high pitched and times when it is there but not as annoying.
How do you think I should approach the haematologist?

Cherieann,

It is too bad that your hema has ignored your concerns about the ringing in your ears.  This is the first sign of desferal toxicity.  It does not mean that you cannot use desferal anymore, it just means that under doctor supervision you may need a small break from it.  Are you on combination therapy?  Sometimes, in these cases it is a good idea to use another chelator for a short period of time until the toxicity clears up.

Best of luck,
Sharmin

Thanks Sharmin,
My Haematologist  has noticed that I seem to exhibit signs of being allergic to it and we have discussed the possibility that maybe long usage over the years may have caused this. At this stage there is no other chelator I can use. We have tried to get the oral tablets but to no avail.
I will be emailing a copy of this issue to her as she seemed to think that desferal does not affect the ears. This however confuses me as when I was accidently overdosed, I was admitted for obs because I could become blind or deaf. Lucky for me, my ferritin was high so I was very lucky.

Cheriann,

Would there be any interest from your health agency in importing Osveral (equivalent to Exjade) from Iran? The price is much lower than for Exjade and probably even lower than the price of desferal. It would be possible to arrange if the New Zealand health authorities are willing.

It's called Tiniitus. I have them since 2 years, and yes I HATE them too!
It's a side effect of the anemia (If this good English). There is nothing you can do about it. There is no cure; they even dont know what it is exaclty. That's why i dont want a cure for my rare anemia, but a cure for tinnitus.

I know a lady who has much more worse tinnitus than me. She turns a fan or a sound machine on when it is time to sleep. She still suffers from insomnia. Mine tinnitus is getting worse so I probably will use those things when it is getting autumn.

I know this information won't help you a lot, but it is a common problem! 

Best wishes, Dore
p.s. They test my hearing in December. First I had excellent hearing, now it is good. But that's more the age than tinnitus - they say.

Thanks Peartree, I did tell the Gp that I have tinitus.
At the moment I am very interested in letting the specialist know what I am going through and any suggestions they may have.
At the moment I am not willinging to accept that I should have to put up with having my fears ignored.
I feel we go through enough without feeling that we have no support.
As my haematologist says.... At the end of the day we STILL have to live with it while the doctors get to walk away each night.
 
I did send this topic and an email to my specialist and this is her reply.

Dear Cherie, You are in trouble all around….I shall get you an urgent ear consult….perhaps you should stop the desferral but where does that leave you!!!

The government have turned down my application for Exjade again!!!!!!!!! I am going to get very angry with them…and will involve the Leukaemia and Blood Foundation to help you;

We need to have  a meeting about your case…you will need to tell me how you feel about any publicity, or we can keep it private….
I am so sorry Cherie

Clinical Assoc Prof Hilary Blacklock

At least the big boss knows now and maybe we can look at other avenues.
I'm still brassed off that they have turned our application down again.
Maybe by making it public, we can bring Thalasaemia out and let people know here in New Zealand.
I could be doing two things with one stone.

Andy,
I have emailed Hilary with your post and I will let you know what she says.

Thank you all for your ongoing support and I wish you all happiness in whatever you put your mind to.
Cherieann

Cherianne,

I hope exjade will be available to you soon,Good luck .

Zaini.

Dear Cherie,

I hope that you get Exjade soon as well.  My son also had tinnitus once (he was 6 years old).  His ferritin was quite low so the docs took him off of desferal for one month - the ringing in his ears stopped and then we resumed desferal.  In his case, at the time withdrawing desferal was ok because his ferritin was very low.  In your case, for the period of time you stop desferal, it would be best for you to be on some chlelation. 

Best of luck,

Sharmin

Thank you Zaini & Sharmin
At this stage I totally agree with you both. I am not going to stop chelation as my ferritin is around 5000 apparently and I really really am not keen to stop chelation.
At the moment Hilary is  giving me ownership of whether to stop or not but she is also reminding me that I don't have any other chelation to fall on.
Until there is another chelation, we will need to keep an eye on all the issues popping up.
Life sure is a challenge. hehehe

Hi Cheriean ,
I hoep you willl get permission to start Exjad very soon ... and you will be able to get all of its benefits ... wishing you for everything , expecialy a healthy and joyfull  life .... You're a True fighter   ( when you will bcome to know wat i realy said , you will be confuse how to react over this) ,  i hope, you will b laughing at that and moment growling as well , you will be confused  that you want to laugh or ...............
hope to see you fighting realy soon ( not to the people but the Thalassemia and iron ) 

Best Regards
Take Care
Umair

Thank you my mate.
With you all by my side... I am always fighting.

Problem solved
How? By springing like a frog. It still hurts still a bit. The tinnitus decided that we are still a couple. Though less worse than deaf.
I never go again for an ear issue to the gp.


I went to the GP to let my earwax removed. There was nothing else what was left and this kind of things are in the family.
Since the appt, 40 minutes ago, I am "deaf". I do not hear at all. I ask the woman who did it and she said they will go open in a while. How long is while? She didn't even said her name & I was too afraid to ask for it. My gp is a men, I saw him only when he visit my grandmother 2 years ago.

I called me father: I must stay calm (nobody will return for 6 pm at home)

I just can't I am supposed to studyi and make a presentation, but I hear nothing except the ringing. Such things only happend to me.
I did some research and I think it's the Eustachian tub.

Has someone an idea?

 

Dore
p.s. I bet someone has to call the ENT-doc for me. I don't like that men. I want the best ENT doc,  
p.s. There is a trick to close your nose and breathe out, but all i hear is my heart. I have it more often and now I found a name: 'Patulous Eustachian tub'. They say it is rare.

OH, once I read somewhere that prematures have undeveloped tubes around the ear... Is that true? I was born premature. [yes, I got al the rare things]
why didn't I look earlier at the internet?

Normally I avoid all medical things during exams, but I thought this wasn't a real medical thing. Btw I had to wait there 25min.... no where in the building was a clock. Strange, huh?

My right (trouble) ear is hurting now. Should I be worried? (The pressure is still not completely gone by this ear.)