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

This has been a really interesting thread! I have had undiagnosed MG for many years and finally got diagnosed about 8 months ago. I was formerly a police dispatcher and some days did great, and other days had a horrible time hearing the radio and phone and others in the room at the same time. I couldn't separate the sounds.

Lately when the family is watching TV, if they turn it up too loud I get anxiety, and it will actually hurt my ears. I never realized this could be from MG.

Neither did I and neither did any doctor/specialist I ever met.

Mine is much much better this week and again is fluctuating perfectly in tandem with all the other muscle weakness that I have.

In one way I am glad it is part of the package I already have and not a brand new separate issue.

For a long time I thought I was starting to develop some sort of a superior canal dehiscence syndrome:

http://en.wikipedia.org/wiki/Superior_canal_dehiscence

Goodness! Imagine hearing your eyeballs moving whilst reading!

(The lady I recently read about with that disease had about as much success with her diagnosis as someone with atypical MG )

I´m not really sure but I´m guessing the pathological erosion of bone in this disorder would result in progressive rather than fluctuating hyperacusis and auditory distortion.

I never related it to when my weakness is worse. I will pay attention now and see if they coincide.

I told my doctor about my weak cough, it worsens when my mg worsens. He said they weren't related, that it was probably allergies. Then I read it is common with MG to have a weak cough.

It is so hard to know sometimes what is MG and what isnt!

Besides the loudness, I hear weird sound from normal conversation. It sounds like feedback from a microphone and amp. I look around and can tell no one else has heard this sound or they would be whincing like me.

kathie

I think it is a good idea just to observe what happens to your sound sensitivity whilst your other muscle weakness fluctuates. I am interested to read everyone´s observations. And I think its amazing that at least one person´s symptoms here were temporarily alleviated with IVIG.

I remember mine fluctuated but in hindsight only very subtly and insignificantly during the worst phase of myasthenia which lasted 3 years. At that time I didn´t even consider it was related to the other weakness. It was only later with almost 100% resolution of symptoms that much to my amazement that it too began to disappear over the course of a few months, and like I said earlier, reappear again during a flare up along with the other more usual myasthenic symptoms.

I think back to all the hearing specialists I have seen who told me I can hear very well (!) and not to avoid sounds - to basically just grin and bear it – I now know I would never go and sit out in scorching heat to exacerbate my DV, general and bulbar symptoms and so will I, in future, likewise never allow for a constant tsunami of loud sounds to reach my precious ear muscles during any flare up ever again! I will conscientiously protect them with the high quality filter musician´s earplugs at certain times where I think appropriate and on select days/time of day with greater muscle weakness.

PS. Yes, your weak cough may very much be a part of it – I do hope you have a neuro that knows about your symptoms and is competent in MG. I personally at least think your doctor needs a thorough evaluation on his skills related to fluctuating neurological muscle disorders!


Anacrusis

My tinnitus was temporarily relieved by IVIG. The tinnitus is worse when the MG is worse. It start when I wake up very faintly. By the end of the day it is much louder. Sometimes deafening, so that I can not understand my daughter or hear the TV. It started at the exact same time as the MG and I have no doubt it is all MG related.

I am going to look for those earplugs you mentioned. Between the tinnitus and hyperacusis while I work, it is difficult to concentrate. It tends to be the higher pitched sounds that have the hyperacusis.

thanks
kathie

Listening to Thunderstorms on Youtube have really helped me out when my Tinnitus is bad. Mine definitely fluctuates. One night about a month ago, my left ear was so loud I thought the tv was on and woke me up. I just fell back asleep because I was too tired to care. I still can't stand the high pitch sound that tube televisions make.