What is Tinnitus
Tinnitus, "ringing ears" or ear noise is a phenomenon of the nervous system connected to the ear, characterised by perception of a ringing, beating or roaring sound (often perceive...
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My ENT who could do nothing referred me to a Tinnitus Specialist named Abraham Shulman. After two months of waiting, I went to see him yesterday, hanging on to the thought that at last I would get at least some info and HOPE. Instead, after examining me, doing hearing test, examining my MRI report and listening to my story of how it started, he basically told me that I had lost high-frequency hearing, that tthe MRI showed age-related white spots on my brain and that probably the elavil "caused" the tinnitus because of underlying stuff already there. He didn't elaborate on any of this. When I asked about maskers, he said at this point that would make it worse. Didn't tell me why or what at this point meant or if or why there might be a better "point." He gave me a nose drop cortico-steriod and a exercise to perform with the radio static once at bedtime--find the static, lower it to zero, raise it to uncomfortable level, lower to comfort level and listen for 10 minutes. Call him in a week to say how I'm doing. And then come back December4, a whole nother month away before considering tests, which I don't even know what know what they might be since he wouldn't say. He also left me their hand-out that seems to indicate that they use various devices for ear-only tinnitus but maybe not for ear/brain tinnitus. I don't know what to do or how to handle this and how to proceed. Everything was kept at a mysterious distance.
The upshot is I am now so completely over-welmed with extreme uncontrollable, even after using ativan, anxiety and fear because I don't know what this all means and he didn't offer any encouragement or suggestions of what might be a plan of help/treatment, that my tinnitus has increased about 10 fold, added some occassional new chirping to the single-pitched ringing. Even though it's Saturday I tried calling but of course no one has replied and I am sure won't. I am so acutely upset I have been actually smoking which I'm sure is helping to make it worse. My entire stomach and body is in paralytic knots. I went thinking I would finally get help and encouragement since he is supposed to be such a well known specialist. None of that. Right now I am a complete, non-functioning basketcase and don't know what to do to help myself, where to turn or what to believe. Posted on 11/07/09, 01:11 pm |
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Wendy,
I am sorry about your experience. I know you are looking for answers and treatment that is going to make this manageable for you ASAP. Our expectations are high when it first strikes. I liken it to a grief reaction. It takes time to work through the denial/acceptance thing. Most if not all of us have been there. Your condition whether it is ear or ear/brain should make no difference with reference to maskers and TRT counseling. His advise in regards to using white noise is correct. Are you sleeping at night in the quiet? If so, don't. Get going on this white noise therapy as it is the first line of defense in managing it. I use a gentle rain CD that plays all night. You might want to get with your PCP and ask for a temporary prescription of Xanax or Klonopin as it is more effective than Ativan. I know this from experience. Have you been on the American Tinnitus Association website (ata.org)? There is so much information and phone numbers of other clinicians in your area. I hope this helps somewaht. Try to stay positive and stop focusing on the negative. It does get better. Mark 
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Yes, it helps very very very much. Thank you. I will check out all your advice and references especially re; drugs and ata.org. Your right about the grief/denial/acceptance, I'm still at the beginning. Thank you again so so much.
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Mark: me again. I did go to and bookmarked the ATA website. I found a section for support groups. There is an actual live people, I think, one listed in the Bronx. Plus a number of ones listed as HNT. This site absolutely fantastic but I think it might help to also hear a living voice. Maybe. Not sure I'm ready to do it yet.
There are no words to thank you enough. How do you know there are a lot of providers listed for NY area? Where is that info located on ATA site? This one may prove to be good, but I would feel a lot better if I had knowledge of others.
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And me one more time. I guess I'm really clueless. Where are the sources for CDs like your gentle rain one?
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Mark, one last time, I promise. How do you get it to play all night? I have a MAC and a really basic radio/CD combo.
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Wendy,
This is a member only area on the ATA site. It would not let me cut and paste so I chose these 2. Dr J Thomas Roland Jr., MD ENT 212-263-5565 www.med.nyu.edu/people/rolant01.html New York University Medical Center 530 1st Ave Ste 3C New York NY 10016 Ms Susan Adams MS, CCC-A Ms Deborah Kupchik MS, CCC-A Audiologist & Coordinator of Tinnitus Hyperacusis Center 917-305-7751 www.lhh.org The League for the Hard of Hearing 50 Broadway Floor 6 New York NY 10004 This is where I get my white noise cd's. http://www.purewhitenoise.com/p-55... Not being familar with your cd/radio I can only say if you can find anywhere on the settings that says REPEAT then that will do it. Itunes on a Mac will let you repeat over and over. You can buy white noise on Itunes as well but a CD is better quality. You can download the gentle rain CD too that I gave you a link for above. ____________________
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Wendy, so very sorry you are struggling. Trust me and like Mark has said, it does get better...honestly.
My first form of defence was also soft noise. I downloaded soft rain sounds from You Tube and my daughter copied it about 50 times onto a MP3 player. I bought some little head phones that were also comfortable in bed and I listened to this very low for months. I also listened to it all day every day, 24/7. If you have it just lower than your T noise you can probably just carry on as normal through the day. Watch TV and hold a conversation etc. Night times are the worse but background noise should help. Try to avoid silence at all times. I have the radio on in each room that I enter in the house. Distraction is a wonderful tool. Keep us updated. You will find lots of useful information here from all the people on the site, Some will work for you some won't. It's a bit trial and error, but one thing I will stress...you have to take control of this and not let the anxiety get the better of you...your T will feed on that. Take care Mandy
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Mark. Wow. Thank you. I had no idea. I will join ATA. This is very very comforting to know.
And thank you so much for the CD link.
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Hi Wendy, do you have an ipod? If you need me to send you rain noises I have 3 minutes that I play and replay for hours. There is no gap on the sound so you will hear it consistently. Send me a private message if you need them. Also, remember the relaxation tapes I talked about? Those are really helpful to. My Dear, just as Mark said, when we first get t we want something to fix it right away. There is no miracle pill, but for sure, your brain will get used to it. Changing the reaction to the noise is the key. For some of us is taking too long but it will happen. Just be patient. If you need med for anxiety, go to an expert and ask what is that you can take. In my case my Dr gave me Remeron. Strong, non addictive (it always gives you a little headache and makes you gain weight ) but helped me to go down the drain. I take 1/4 a pill every other week when I have trouble sleeping. Exercise will be my best advise. Jog and Jog until you get exahusted. Please keep us posted no matter what.
Cheers Mich
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Thank you Mich. I downloaded a rain noise clip and Mark gave me a link to a good CD that can be downloaded as mp3. I can play them on my MAC at night. I am going to get a cheapo little ipod, shuffle or whatever, tomorrow so I can be mobile.
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