Does anyone with CCSVI have 'super hearing' ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby bluesky63 » Thu Aug 05, 2010 7:01 am

I think there is definitely a connection between CCSVI and hearing, whether it is sensitive or diminished. During my procedure I could *feel* something happening to my right ear's hearing as the doctor was ballooning something. What a bizarre sensation! And right afterward in the recovery room my hearing improved. :-)
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Postby HappyPoet » Thu Aug 05, 2010 8:42 am

I have what my ENT doctor calls "auditory hallucinations." Not fun. I'm always hearing my dog barking, the telephone ringing, "Mom" being called out, and a few others. I also have terrible tinnitus of a high pitched tone.

I once read that the veins of the auditory and optic areas drain through the the internal jugular veins... so, to me, it seems plausible that CCSVI could affect hearing, vision (ON), smell, and taste and perhaps the other cranial nerves, too.
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Postby Rompers » Thu Aug 05, 2010 10:25 am

I have always thought it was "just me". But perhaps the super hearing issue makes sense. Even when I was a child, I would try to use a pillow to block noise, so I could get to sleep at night.

A dripping tap at night will drive me to get up and shut if off, even though my husband and boys cannot hear it. (Perhaps that is a GOOD sign for our four sons that they cannot!!)

It makes it difficult to tune out more than one noise source as well. I have a bit of a time, staying focused on one conversation, when I can clearly hear two (or more) going on...
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Postby Wonderfulworld » Sat Aug 07, 2010 11:46 am

I did have super hearing, it was testing beyond the normal human range. I developed tinnitus at 12 years old. I strongly suspect my MS started around that time because I also had other symptoms.
By age 25 the tinnitus had increased greatly. During a major relapse (the one that got me diagnosed) I lost all hearing in my right ear. Sadly, that has never come back and there is no functional hearing so I can't wear a hearing aid.
I hear the sound of my pulse in my remaining 'good' ear too. I am optimistic that maybe CCSVI treatment will help the deaf ear.....but because my MS is quite stable at the moment I'm going to continue to wait and see how treatment is going for others.
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Postby Billmeik » Sun Aug 08, 2010 9:20 am

Although I havent made any money at it in years, I used to be a professional musician and I went to music school for a couple of years. In the course called 'ear training' they jumped me out of first year to third because it was too easy for me. I could name five part chords without looking at the piano. and write down simple melodies as I heard them...Lots of people with ms are musicians. I wonder if this ccsvi->sound sensitivity correlation is true, do some of us use it for a job?
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Postby Lyon » Sun Aug 08, 2010 9:59 am

Last edited by Lyon on Sun Nov 20, 2011 7:10 pm, edited 1 time in total.
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Postby coach » Sun Aug 08, 2010 12:26 pm

I think the super hearing phenomenom in MS is a real one. Have had a startle reaction to loud noises for years and can hear the frequency hum of a light bulb on a dimmer switch when it is turned down. Repetive noises like a dripping faucet a ticking clock,etc. drive me bananas when trying to sleep. I've been known to hide clocks behind pillows just to eliminate the noise or muffle it.
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Postby WeWillBeatMS » Wed Apr 13, 2011 8:00 am

I just found this thread by Googling "CCSVI" and "hearing".
I suddenly lost my hearing in my right ear eight years ago and have tinitus and dizziness left. Since then I am extremely sensitive to noises and they don't even necessarily need to be loud noises. Some of the wierdest little tweeks or clicks can make me jump. It's embarrasing and frustrating. I definitely don't do well at parties or even rooms with lots of people. It's all a bunch of noise and even if I have someone sitting on my left (good) ear I can't understand them in those type of settings. I'm usually just looking forward to leaving then. Prior to losing the hearing in one ear I used to have super hearing like a terrier. For a few years prior to losing the hearing in one ear and subsequently being diagnosed with MS I felt like my hearing was get getting worse and even went and had hearing tests done twice. They would always tell me that my hearing was great and even better than average, yet I knew that it was not as good as it used to be.
I am scheduled for the Liberation Procedure next month in Brooklyn with Dr S and am hoping to get some relief.

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Postby 1eye » Wed Apr 13, 2011 8:58 am

Startle reaction is a great way to describe it. It seems to be time-of-day related to me. At a certain point (maybe it's because I have spent the day alone, and begin to be surrounded with stimulus) I get very irritated by what seem to me to be sudden sounds (sounds of dinner being prepared, which I am really grateful for). I do think I am more hearing sensitive, even though I have to ask people to repeat themselves, and hearing doctors say I'm 'OK'. The other day the power went out. There was nothing making any noise. I could hear a sound, though. It was our battery-powered clock, ticking once per second, two rooms away. All anecdotal, so so what, I know?
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Postby dania » Wed Apr 13, 2011 3:53 pm

I do have super hearing. My friends and family cannot believe how sensitive my hearing is. I am aware of sounds that they do not hear. And I do not like loud noises.
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