I just watched this lecture also. Very informative, but yes a bit discouraging.
My Tinnitus has become so bad I can hardly stand it. Along with the constant, very loud, high pitched tinnitus, I started having clicking and popping and grinding sounds. When the clicking started it sounded like someone tapping their fingernails on a hard surface. This would only happen every so often. Then that clicking became more and more regular. Then it progressed to a very rapid speed and sounds more like a snare drum in my head or a grinding sound, sort of. When this happens I get very dizzy and my eyes seem to shake..If I'm driving I have to pull over. When this started it would happen every few months and occur every few days or so. On the days it was happening it would be all day, about every 3 to 5 seconds. Then I would have a few months of relief from that, just hearing the normal constant high pitched tinnitus.
But now this has progressed even more, and I've been experiencing this other tinnitus (clicking, snare drum, grinding and dizziness) on top of my regular constant high pitched tinnitus, constantly - every day, all day long. It has been about 4 or more months now. Sometimes it slows briefly, but is always there. I'm having problems sleeping, hearing (of course), concentrating, focusing, thinking...it's affecting my work and my quality of life now...I'm constantly dizzy, can't watch moving things like trains or cars going by, I get dizzy when driving and have to look both ways quickly before a turn, and also when that fast grinding starts. It's driving me mad!
I have been explaining this to the neurosurgery department for the past several years, each time I have my yearly MRI, and also to an ENT I see to have hearing checked etc... they never offer any advice on how to manage it, treat it (if possible) or deal with it. They seem to not want to do anything at all about my tumor since it's not growing. I've never been referred to anyone else about it, and I'm starting to think I need to find doctors in a more populated area that might have more experience with treating people with these tumors or that want to help people with these tumors. I get the feeling they don't want to be bothered actually... I understand there are more serious tumors they have to deal with...
My Accoustic Neuroma was diagnosed about 3 years ago. They say it is about 1.2cm x 9mm x 7mm approximately, and it hasn't grown they said. But my symptoms are changing and getting worse.
Just looking for help, advice etc.. how do you guys managing severe tinnitus? And does anyone know of a better place to go for a consultation? I live in New York State, Central NY area.
Whew, sorry for the long post! Thank you in advance.