How does one determine if the sounds you hear are real or tinnitus?

I understand. I’ve always described mine as hearing the bugs when I went camping as a child. Like the Cicadas.

Hello and thank you so much. I have never, not once in all these years of suffering ever been offered this. Can you tell me how to locate someone who does this please. It sounds like a specialty thing. I will try anything. I will research and hope to hear back from you. I know many fields have a speciality field. I see a physical therapist that only does pelvic floor disorders. I’m wondering if these specialist are tough to find. I’m looking. Many thanks,Joanne

Joanne,

I'm very fortunate in that I live two hours away from one of the nation's earliest/best vestibular centers, in Portland, OR. When I first had real problems with Meniere's nearly 40 years ago, VRT was a new thing with very few people who practiced it. I was a moderator for the online Meniere's Discussion group until about four years ago, as it began to disband, so I was aware of places that offered VRT as they popped up--the House Clinic in LA and a clinic in Fort Wayne, Indiana, to mention two. There was one in Texas, because one of the VRT specialists often participated in the Meniere's Group. The one in Portland was involved with testing astronauts before and after early space flights (weightlessness) to see how they affected balance; they developed the machines that test one's balance (or lack thereof) and many of the exercises. Dr. Eply, of the Eply Maneuver, was also a Portland doc. The national non-profit for dizziness and imbalance (VEDA) got started in Portland. I believe that now some of the Mayo locations offer VRT.

ENTs don't have specialized training in balance issues or the complexities of inner ear diseases like Meniere's or MAV (migraine-associated vertigo). MAV wasn't even known until about 25 years ago; it is correctable with standard migraine meds, unlike Meniere's, which has no known treatment that actually works other than aids or CIs for hearing loss and VRT for balance. These diseases have no known cure and are extremely difficult to diagnose.

When I was really ill with Meniere's over 35 years ago (for four miserable years), there was no one even in Portland who offered VRT, so I learned from the woman in Texas, via e-mail. I learned more while editing and designing the first book about Meniere's by corresponding with the author via e-mail. At the time, it was believed that VRT was useless until you quit having crises; later it was learned that's not always true. I finally found a safe combination of hormones (my personal trigger was low hormones) while I was working on the book, so the timing was perfect: once I started taking megadoses of hormones, I quit having crises of 12-15 hours 2-3 times a week. I remained free of those "vomit fests" until a little over two years ago, when I went bilateral--and it took me almost a year to find a local doc willing to prescribe hormones for a woman in her late 70s. Again, two weeks after starting large doses of hormones, I regained the hearing in one ear that I had had prior to going bilateral and quit having crises. For the first time in nearly a year, I heard a bird sing and I could hear the dishwasher or washer running--terribly exciting after a year of being nearly totally deaf!

Because I had never actually gone to a VRT therapist, I scheduled visits to Portland's Legacy Good Samaritan Vestibular Clinic for a refresher course. I have to work harder on VRT exercises now because my lower legs and feet have lost some of their ability to "talk" to me, due to age. Yesterday, I had to make at least a dozen trips up and down the stairs to our loft, and realized that I need to work on my little step: five times down and up with the right foot, eyes open, then five times with eyes closed, the the same with the left foot. All VRT is simple stuff to make you aware of what your feet have to say--which means you're learning proprioception, the only way to balance when your primary inner ear system is kaput. Another thing I do is walk the quarter mile on our gravel road every day to the mailbox with my eyes closed; I can feel when I get close to the side of the road because the gravel is deeper. I think about what my feet are telling me all the time I do this. I also walk in place on a thick foam mat, eyes closed--a real test. I try to walk around outside in the dark: our entire mowed yard area is hilly, full of gopher mounds, so it's a good place to practice. Never use a night light of any kind: you know where things are in your house so should be able to walk around in the dark safely once you start doing VRT. The nice thing about VRT is that you can do lots of it while doing ordinary things (like retrieving the mail)!

@awilst For me, the way I determined it was indeed tinnitus was to block my ears to see if the sound was still there. It was. I notice it less when I have my hearing aids in, probably because I there are other background noises. When I am in bed though the sounds come through loud and clear.
JK

anyone feel the vibrations? like when your on a ship? I can hear & feel the vibs??? wife cant???
audi says if you feel it its real?? ent guy no help. who specializes in this stuff?

I block my ears with my fingers. If the sounds are louder then it is tinnitus you are hearing. If the sounds are lessened by blocking your ears then it’s not the tinnitus you are hearing.