I was able to get in touch with Dr. Robert Levine, the lead Dr. on the research, he sent me this PDF summarizing their efforts with this condition. His e-mail also had some links to Youtube videos, but I think they were more about general tinnitus. I can forward the e-mail if anyone wants it.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxkb2N0b3JsZXZpbmVzdGlubml0dXNzaXRlfGd4OjVhOTFlYTRiZTMyY2Q4N2E
I think I have Pulsatile Tinnitus- it wanes, pulses. I can touch my face and aggravate the T. When I stand I get dizzy and the T swoshes. Tinnitus is called a secondary neuropathy. My feet are also experiencing the neuropathy.
Does anyone have feedback or experience with this? Thank you.
I initially thought it might be a problem with my neck, maybe a nerve or something. Yawning tends to temporarily increase mine more than anything, so I can't really isolate a specific area in the neck.
Along with the pulsating hiss, I also had a 3 month period of noise sensitivity known as "winding up" and "kindling" where the hissing would get louder and some static and ringing would start. It's 95% improved now.
I also experienced some strange phenomena with my auditory gain where I could hear it gaining down the tinnitus noticeably over a period of a minute or so after a while of wearing ear plugs in a loud environment.
With the research team suspecting the DCN, and everything else I experienced, I really believe that something in my brain is to blame. It probably is the DCN, with other parts being thrown off balance trying to compensate. I don't know why though, my hearing is good.
So wait, I'm confused. For a while now I have thought that my T may be attributable to muscular inflammation/compromised DCN, but now I see that somatic movement in this type of T actually LOWERS the volume/pitch temporarily. Mine does exactly the opposite.
I have not found any somatic maneuver that causes my T to LOWER in volume, but moving my jaw to either side, turning my head, and opening my mouth, even slightly, makes my T a higher pitch and slightly higher volume. Really, tightening any muscles in my body, hands, legs, etc, causes my T to jump temporarily.
Is this indicative that I don't have SSPT, but instead have some form of otological tinnitus? Thanks so much for any info, greatly appreciated! - Steve