Quote:
Originally Posted by cait24
Thanks for this. My tinnitus and hyperacusis has been nearly constant since my surgery that exaccerbated my MG 18 months ago. The tinnitus went a way for 1 day after 5 days of IVIG. Since then I have had a few hours here and there tinnitus free. But at night, it gets so loud it is deafening and I can not hear my daughter or the TV.
The hyperacusis really bothers me at work. I can control the volume of most things at home. But people talking outside my cubicle, or cell phone tones etc are severely distracting at work. I find it hard to concentrate and get anything done. I just want to put my hands over my ears. It does not bother anyone else at work. Even a few co-worker with louder than normal voices, I find irritating and there is nothing I can do about this symptom. At least the muscle MG weakness gets better after a few hours of rest in the recliner, but the tinnitus and hyperacusis is unrelenting.
kathie
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Hi Kathie
Are you saying that the hyperacusis started after an anesthetic trigger?
It is interesting that IVIG gave you relief from tinnitus at all. It seems like it is a very stubborn symptom. I am so sorry yours is bothering you so much. I noticed that mine progressed in severity over a 3 year period along with other myasthenia symptoms and noise at the work place was an enormous contributing factor to general fatigue in addition to myasthenic weakness. Mine was very very nasty as well. The distortion of hearing normal loud sounds for me was like someone turning up an out of tune radio up full blast and having you put your ear next to the speaker and act as though it were normal. That is not even mentioning the pain. I would say from my max 10 it went down to 0.5 for 6 months. After a heat trigger it then went back up to 5.
I know doctors say you shouldn´t avoid the sounds - But wait a minute….! If you are having leg weakness do you force your self to take the stairs instead of the elevator because it might get worse if you don´t use them? With a flare up of bulbar symptoms and masseter muscle weakness, do you just go ahead and order that usual steak at your favorite restaurant anyway?!
It may be something worth considering looking into if you haven´t already, but high quality musicians ear plugs´shave´the edge off certain sounds without distorting or muffling them, (maybe for temporary use at the work place). It is possible to mould them to your own ear canal, and 9dB I believe is the lowest filter you can get. They are expensive but are almost´invisible´and discreet unlike´Hearos´but which are also very good if on a budget. I have used both, as I work with unpredictable decibel levels and also have those kinds of friends who like to talk and laugh using the highest levels available!
http://www.sensaphonics.com/?p=331
It seems as though for some people the smallest muscle in the body, the stapedius, is receiving the biggest and most unpredictable assaults of all. (That poor tiny cute little thing!)
http://en.wikipedia.org/wiki/Stapedius_muscle
I either need a bit more convincing or a bit more research, but how that skeletal muscle comes under your´voluntary´control I have yet to figure out.
All my best,
Anacrusis