Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 01-18-2013, 09:24 AM #11
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by seishin View Post
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.

ī3. 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.ī

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 couldnīt understand why as I didnīt have those symptoms)

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


Myasthenic ears???.......Impossible!!!!!!!!!!


Anacrusis
Anacrusis is offline   Reply With QuoteReply With Quote

advertisement
Old 01-18-2013, 09:44 AM #12
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Hyperacusis is one sign of low B6 levels.

You can find many sites on the net about this.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (01-18-2013)
Old 01-18-2013, 09:59 AM #13
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
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..
Anacrusis is offline   Reply With QuoteReply With Quote
Old 01-18-2013, 10:15 AM #14
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 01-18-2013 at 11:18 AM.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (01-18-2013)
Old 01-18-2013, 10:51 AM #15
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
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 us 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 - donīt 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
Anacrusis is offline   Reply With QuoteReply With Quote
Old 01-18-2013, 10:54 AM #16
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

Quote:
Originally Posted by seishin View Post
I was wondering aloud how I could be more sensitive to sound while simultaneously experiencing hearing loss.
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.
Quandry is offline   Reply With QuoteReply With Quote
Old 01-18-2013, 12:21 PM #17
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default 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 didnīt help matters that much. In fact it probably didnīt help anything much after the infection. I read it can also deplete potassium and alter other processes.....(glucose/proteins)
Anacrusis is offline   Reply With QuoteReply With Quote
Old 01-23-2013, 11:30 PM #18
Maiden8680's Avatar
Maiden8680 Maiden8680 is offline
Junior Member
 
Join Date: Jun 2012
Location: NJ
Posts: 52
10 yr Member
Maiden8680 Maiden8680 is offline
Junior Member
Maiden8680's Avatar
 
Join Date: Jun 2012
Location: NJ
Posts: 52
10 yr Member
Default

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! ).


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.
Maiden8680 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (01-24-2013)
Old 08-18-2013, 10:10 AM #19
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

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 donīt 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 isnīt always permanent in all cases. (I have a suspected atypical MG diagnosis)


It was interesting to read this:

īHyperacusis (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.ī

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
Anacrusis is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cait24 (08-18-2013)
Old 08-18-2013, 06:01 PM #20
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

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
cait24 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (08-28-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Hearing problems / Tinnitus / Sound sensitivity jayhybrid Traumatic Brain Injury and Post Concussion Syndrome 7 01-16-2013 04:32 PM
For anyone with sound sensitivity... pbob10 Traumatic Brain Injury and Post Concussion Syndrome 1 01-23-2011 05:11 PM
Music-triggered gelastic seizures connected to sound sensitivity? Failkidd Epilepsy 10 06-25-2010 03:01 AM
sensitivity stressedout Reflex Sympathetic Dystrophy (RSD and CRPS) 5 07-20-2009 12:10 PM
sensitivity cyclelops Peripheral Neuropathy 26 03-25-2008 08:38 PM


All times are GMT -5. The time now is 07:37 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.