mcnarym1 Posted July 27, 2016 Report Share Posted July 27, 2016 Just wanted to post a topic about tinnitus to ask some questions and also provide any answers to those who might have it as well. First for my tinnitus story. Anyone who either hasn't gotten the implant yet and is in the process of waiting for activation and has tinnitus; don't worry it gets better! I myself have had tinnitus in my right ear ever since I had cancer when I was a child and the radiation had effected my right ear, however my hearing was decreased from the radiation so much that I could barely hear the sounds (high pitched buzzing sound for me). But once I lost my hearing in the left hear, very suddenly and rapidly, I had the worlds worst tinnitus. When I went to the ENT they diagnosed me with severe tinnitus. It was so bad that I couldn't sleep, one night I was actually up for 23 hours straight and nothing would put me to sleep, I wound up in the ER because I was also on a very high dose of prednisone for the sensorineural hearing loss/autoimmune inner ear disease. Long story short I was finally evaluated for a CI and got the surgery on June 24th. When I woke up from the surgery I remember still having tinnitus but it wasn't nearly as bad. Since my activation last week, my tinnitus is SO much better. It's not 1000 different sounds, now its just one or two and it's much much quieter now that I can hear other things to drown it out. So for those of you that might be in the waiting process to get your CI activated, tinnitus can get better with the implant so hang in there! Don't go crazy like me. If anyone needs a laugh my embarrassing tinnitus moment was before I got the surgery and the tinnitus was so loud. One night I smelled something burning but I couldn't figure out what it was and my fiance wasn't home, I was freaking out and my new puppy was barking more than she usually does. I started crying because I was panicking and so I called 911 and told them I can't hear you very well but I have hearing loss and am partially deaf, I smell something burning but can't find it I checked every room can you send someone to check. Long story short this big group of fireman came and basically it turned out to be that there was a container lid that had melted in the dishwasher while drying. My tinnitus was that high pitched and loud that I couldn't tell if my smoke detectors were going off or not! Second is some questions I have for those of you that do have tinnitus. Like I said it's much better than it was but it still has it's moments. Yesterday when I went to the gym I took my CI off since I don't have the sports headband yet and didn't want it to get sweaty. My tinnitus went from being low bird chirps when it's on, to loud sounds that ranged from high pitches to birds and buzzes. Does anyone else have this problem when they take they're CI off? The minute I out it back on it quiets down again. Speaking of birds chirping, does anyone else have that form of tinnitus? To me it sounds like I'm in a forest/woods with the birds chirping from a distance. Last question, at night when I go to bed I take my CI out and by the morning when I get up, the tinnitus is very very quiet and I barely hear it again until I put the implant on. Does anyone know what could be the reason for this? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted July 27, 2016 HearPeers Heroes Report Share Posted July 27, 2016 I have had tinnitus for decades and mine has also improved with my CIs. I don't notice it when the processors are on. I hear it again when the processors are off but it is much quieter than prior to CI surgeries- it is also a bit different in sound. In the early weeks I used to describe what I heard when I took my processor off at night as my ear screaming back at me. Smile. It was so loud and so different from my normal tinnitus. I figured that my ear deserved to scream back after having to deal with so many new inputs all day. By the time I awoke in the morning, I was back to my normal tinnitus. That went away completely. It was part of my early journey only and I have read that the same thing has happened to others also. Hopefully your experience will be similar. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted July 27, 2016 HearPeers Heroes Report Share Posted July 27, 2016 I agree with Mary Beth. I too have tinnitus. It comes when I take off my processor at night and goes away mostly when I put it back on. Although I on,y have one for now. The tinnitus is bad in my unimplsnted ear. All the time now. I sure hope I get implanted next year. Quote Link to comment Share on other sites More sharing options...
mcnarym1 Posted July 27, 2016 Author Report Share Posted July 27, 2016 I agree with Mary Beth. I too have tinnitus. It comes when I take off my processor at night and goes away mostly when I put it back on. Although I on,y have one for now. The tinnitus is bad in my unimplsnted ear. All the time now. I sure hope I get implanted next year. I wish I actually could get implanted in the right ear as well because I can tell that the autoimmune disease is beginning to attack that ear as well. Unfortunately because my cancer from younger years affected my right side, it zapped all of those hair cells so they said doing a cochlear on the right side wouldn't really do much. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted July 27, 2016 HearPeers Heroes Report Share Posted July 27, 2016 Wow we all really have some life challenges. I have many that do not have anything to do with my ears!! Lol Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 2, 2016 HearPeers Heroes Report Share Posted August 2, 2016 It will not do much because sense of tinnitus is actuallt centrally situated condition. "weakening" of it during that is just the result that brains is efficiently activated so brain is not occupied with hearing cells damage. Quote Link to comment Share on other sites More sharing options...
Kenda Wilson Posted February 27, 2017 Report Share Posted February 27, 2017 I haven't really worked or tried the implants yet. My tinnitus never really got that bad. But the worse time for my tinnitus was during the night. During the day, I able to concentrate and focus on other things so that wouldn't hear the tinnitus. IT wasn't easy, but the night was so much worse. I would get no sleep because I would obsess over the noise my tinnitus made in the silence. I suffered for months until I actually used a tinnitus masker for nighttime sleeping called Sonorest Sleeptones. I like the noise canceling machine because it produces white noise, but also produces pink noise and brown noise too. It chooses the sounds at random and gives me a good night rest. Even when I don't have my pulsatile tinnitus because it does go off and on, I like the way the noise sounds and puts me to sleep with no tinnitus. As a tinnitus sufferer, we really don't know what complete silence sounds like, and at this point, it just sounds scary. If you are interested in this Sonorest I am talking about, look at www.lipoflavonoid.com to learn more. Great article. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted February 28, 2017 HearPeers Heroes Report Share Posted February 28, 2017 Pretty interesting. I did not realize this was out there. Thanks for sharing Quote Link to comment Share on other sites More sharing options...
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