Sound sensitivity
 

Hello again.

I'm interested to know if anybody has problems relating to sound sensitivity. I have significant problems coping with too much sound, which seems to impact on muscle weakness. For example, I cannot hold a conversation if there is any background noise as it makes my muscle weakness much worse. Similarly talking whilst standing up or trying to walk is an absolute no-no.

Does anybody else have this problem?

Thanks :)

I have not made certain connections but do not like being in loud places and have found i am especially irritated by motorized equipment (chain saws, lawn mowers, etc). Also i have so much trouble hearing conversations in movies that i ffrequently use closed captioning. Few years ago i had full hearing testing and theysaid no problems

Those are three separate issues:

1. There is sensitivity to loud mostly high pitched sounds because the small muscle in our inner ear is not working properly to dampen them.

2. Holding a conversation with background noise requires talking louder, which means putting more efforts to articulate each word. So, it is not a surprise that this extra effort makes you weaker.

3. Any activity that you do requires respiratory efforts. (even if you are not aware of it), talking requires respiratory efforts. So, doing both=more respiratory efforts which can exceed your limits.

Loud noises are a problem with me. I have a disease called Trigeminal Neuralgia which is very painful. One time I was in a store and a vacuum was being used. It must have been a certain vibration that triggered the pain. I don't know if MG is related to my issue though.

I can't stand loud noises either.. this used to not be the case before my symptoms started (I was also pregnant though, so I chalked it up to that).. I sometimes get a little ringing and deafness in an ear too - it lasts for about thirty seconds..
Alice- I agree, I used to be able to have talk over people , but it is exhausting now! My speech is worse by the end of the day if i have had to talk a lot or talk loudly..

I love loud noises. I crank up my electric guitar and let her roll.:Dancing-Chilli:

Me too! It's interesting about the inner ear muscles - I had never considered you needed muscles just to listen! I think I cope better with louder noises when they're expected. A sudden or unexpected noise could cause me to collapse! It's amazing how just hearing the wrong sounds or being challenged by sound whilst engaged in another 'muscular' activity can cause the body to freak out...:)

It's not amazing at all. our senses are meant to give us information and warn us about our surroundings.
In the modern world we are taught from an early age to ignore most of this information. We also deceive our senses by creating artificial odors and tastes. When our ancestors lived in the jungle, a loud noise meant danger, not going into a discotheque. :rolleyes:

My doc had a hard time believing that keeping from falling over into your dinner plate and washing of hair had anything to do with muscle weakness - and that problems swallowing could not possibly be related. So coming to the office with a pair of dysfunctional ears on top everything was not going to help my already dwindling credibility!

wild-cat & bny806….I have that exact same thing going on as well. Some of mine is due to noise exposure:

http://www.agius.com/hew/resource/nihl.htm

According to one ENT specialist I have hyperacusis AND recruitment which seems like two contradicting conditions.

Hyperacusis started (very memorably so) in pregnancy. It fluctuates. I can sometimes hear when a TV is just on standby in another room. I´m not able to separate the conversation from the background noise either, Steph. And wild_cat, I´m the same, protective reaction time to sudden :eek: loud spontaneous sounds is way too slow and so I reach the threshold of pain way too early.......

This thread has been really helpful. I'd been wondering what causes sound sensitivity.

The largest issue for me has been dealing with sounds over the cellphone. If my friend is cleaning or clanking things in the background while we're talking on the phone, I start jumping out of my skin and have to hold the phone away. We have an agreement now to hang up if he's going to run a blender or wash dishes etc.
Also, when he gets caught up in a story and starts talking in a higher pitch on the phone, I lose ability to understand what the heck he's saying.

Simultaneously, I've noticed a significant loss of hearing in my left ear. Prior to the diagnosis or having researched anything about MG, I was wondering aloud how I could be more sensitive to sound while simultaneously experiencing hearing loss.

I am still wondering about that!!!

I wonder if you can have hearing loss at a certain frequencies and sound sensitivity at others..........

I got a diagnosis of hyperacusis and recruitment many years ago.

´3. Recruitment: This condition is ALWAYS a by-product of a sensorineural hearing loss. (If you don't have a hearing loss, you can't have recruitment.) A person with recruitment perceives volume increases much faster than the actual volume increase. As a result, sounds rapidly become too loud to stand. A hard of hearing person may have both recruitment and hyperacusis at the same time.´

http://listen-up.org/med/hyperacu.htm

Those symptoms that you describe I had for years. Also taking the dishes out of the dishwasher and them clanking against each other in the cupboards was murder. Working with unpredictable decibels at my job was even worse.
(I was sent on a tinnitus course but couldn´t understand why as I didn´t have those symptoms)

It is odd that my own myasthenic weakness started to improve and my ears happily followed suit :)


Myasthenic ears???.......Impossible!!!!!!!!!! :wink:


Anacrusis

Hyperacusis is one sign of low B6 levels.

You can find many sites on the net about this.

Thanks.... I also found this and had a quick read....:)

http://neurotalk.psychcentral.com/thread168076.html

I never had B6 but the B12 was always actually pretty high..

What was "high"? There is no upper limit to B12.
Lab ranges are just estimates, and really, the lows are concerning...many people are walking around with low values, and their doctors call it "normal"

You are in another country, yes? Post your values here along with the concentration either pg/ml or pmol/L and I can convert it for you.

Most countries but not all use SI units:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

Dr. Snow in US wrote the major turning point paper on B12 in
1999, and in it he found that people with moderately normal B12 could still present with neurological symptoms. He suggests
therefore to take B12, extra.
His paper link can be found here:
http://neurotalk.psychcentral.com/post698522-70.html

If you are interested further please read the whole B12 link at PN in the stickies. I have genetic information there as well that
leads to poor B12 utilization.

High B12 readings, above 1000 US units may point to other disease states in the body. Liver problems, kidney problems, blood cancers, etc. When this happens and NO vitamins are being taken, it is a warning for the doctor to look for the culprit.
But the levels themselves are not "toxic"...they are only a flag.

I dug up my blood tests from my journal and there is no pg/ml or pmol/L on the sheet. The normal range only states 140-680 and mine was 600. I thought that was OK! The only other tests that I ever wondered about were always low liver panels (ALP, Gamma GT, Alat etc - don´t find right now but they are always asterisked. But the doc just said it was bad if they were high and that is OK with me.)

Yes I am interested in reading more about vitamins. Thanks for all this valuable info look forward to reading it :)

Anacrusis

My hearing has been going over the years. I get the loud roar in my head like I'm in a factory, or like a motor is running in my head, but I am also sensitive to sound. The other day my daughter was just talking and it seemed as though she was screaming, but she wasn't. I think the roaring noise is tinnitus, but I'm not sure. I always forget to tell the doctor about it since I've got too many issues already. I also get migraines, but the migraines are usually visual, without the headaches, and I noticed noise bothers me when I get the migraines. The visual disturbances were strange: seeing rainbows from both eyes followed by brief total blindness. Another time I saw geometric shapes that seemed to move towards a spiral and blocked my visual field for a few hours. So, I imagine sound can get pretty messed up with migraines too. I know my issues have nothing to do with the b vitamins because I take b vitamins every day. I also take cod liver oil for the noise and although it doesn't get rid of the roar, it helps.

Antibiotics/pregnancy & increased sound sensitivity
 

I remember my hyperacusis started right bang in the middle of pregnancy.

I wonder if a few years later when I had 12 months of antibiotics circulating in my blood stream it probably didn´t help matters that much. In fact it probably didn´t help anything much after the infection. I read it can also deplete potassium and alter other processes.....(glucose/proteins)

Wow, I'm not the only one! I'm so glad to have come across this thread! I noticed my change with certain sounds at high pitches in June 2010 (and then I had my MAJOR MG outbreak/discover that September). I bet that's what it was. And here I was thinking the band Motorhead was what finally did my hearing in lol (KIDDING! :D).


I'm a huuuuuge concert going (heavy metal mainly so you can imagine, quite loud & distorted). I never used to wear earplugs, but then in 2010 (June), I noticed that I just couldn't take certain pitches & the volumes anymore (comfortably). I started to feel freaked out for some reason, and its funny because I felt like I NOTICED the change happen and can pinpoint the time. It didn't seem gradual. I experimented with those cheap foamy earplugs and found that it helped. Now I have a nice pair that helps take away from the distortion (which is what gives you that "ringing" after a concert) and you can still hear the concert loud, but comfortably. It's helped a LOT and I've been doing it ever since. Probably should have done it sooner hehe.


There are a few other things though that I absolutely can NOT stand...like some of those air blow dryers in public bathrooms. The one at my work is really loud, and when the sound/pitch changes because it's blowing on the persons hands, it makes a noise that I just cannot tolerate.

In January when my symptoms started to get better so did my hyperacusis.
It was such a delight to be able to listen to clanking plates, kids shouting, all the sounds that you would normally be able to handle when you don´t have sound sensitivity. I did not expect a remission with that alongside a remission from deltoid, trunk, bulbar, mild DV etc etc.

Nor did I expect it to come back just a little over a month ago, with the addition of mild tinnitus sounds, after I had a flare up with the original muscle sets. (especially hands)

The worst sound sensitivity was a 10 in previous years (small taps on plate with spoon/knife) Now it is back as a 5. It is certainly back and not resolved again quickly with the other symptoms this summer.

I simply wanted to share my happy discovery in that I was diagnosed with hyperacusis, and that it isn´t always permanent in all cases. (I have a suspected atypical MG diagnosis)


It was interesting to read this:

´Hyperacusis (increased auditory volume in an affected ear) may be produced by damage to the seventh cranial nerve. This is because the seventh cranial nerve innervates the stapedius muscle in the middle ear which damps ossicle movements which decreases volume. With seventh cranial nerve damage this muscle is paralyzed and hyperacusis occurs. Furthermore, since the branch of the seventh cranial nerve to the stapedius begins very proximally, hyperacusis secondary to seventh cranial nerve dysfunction indicates a lesion close to seventh cranial nerve's origin at the brainstem.´

From here:

http://informatics.med.nyu.edu/modul.../cranials.html

And also this one:

http://www.mga-charity.org/informati...with-gravis/98


Have a wonderful day,


Anacrusis

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

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 :rolleyes:)

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.