Hyperacusis

Everyday living
1

Found this which I think would b of great interest to those of us who have this terrible life limiting problem caused by MS.

Greetings from Pennsylvania. My name is Harry, and I am a retired speech-language pathologist. And I’ve been monitoring this board on and off for years. . . yes, I’ve been lurking. Now I have something that I think is important that we need to consider. I have an extensive background in audiology. And, importantly, I’ve been dealing with severe hyperacusis for about 20 years.

First, I thought it was recruitment. I attributed this to noise exposure related to my military service.

Prior to my retirement, I was preparing for a medical leave-of-absence from my work in the public schools directly related to hyperacusis. Then, all of a sudden, about three years ago, my hyperacusis improved about 80% in a matter of a few short weeks. The leave-of-absence was no longer necessary. Earplugs that were a necessity of daily life were gone. TV, crowds, even the noise of our ice maker became tolerable. Now I know why.

You see, I’ve been diagnosed with multiple sclerosis. The condition isn’t new, just the diagnosis.

My initial treatment IV medical treatment, designed to reduce the severe neurological attack I was experiencing, was quite effective. It didn’t make the MS go away of course, but it did reduce the neuro flare that was in progress.

At that time, in the course of a few weeks, my hyperacusis improved greatly to the point where life was bearable.

One of the first symptoms of MS often is optic neuritis, an inflammation of the optic nerve resulting in acute visual loss. There isn’t much of a stretch to think that the very nearby acoustic nerve could be similarly affected.

In any case, I was quite knowledgeable about hyperacusis, tinnitus, recruitment, and things auditory. Now, I was becoming knowledgeable about multiple sclerosis.

One thing strikes me plainly, and it’s this. Almost no one in the hyperacusis community is talking about multiple sclerosis. Almost no one in the multiple sclerosis community is talking about hyperacusis. I believe, very simply, that in some cases, there is a connection. Other significant auditory disorders are often a part of MS. That is known. I have had some input to current research on this connection. Some important research is currently under way—and due to my input now included hyperacusis.

There is so much to focus on in both MS and hyperacusis. I think it’s very possible that no one has yet made the connection, or asked the right questions, or put it to the test and the scrutiny of rigorous research investigation.

I wonder if there is anyone in this group who thinks that this is a productive direction to pursue. Or, if there are others with similar experiences.

Best wishes to you all,

Harry L. Borger

Pennsylvania

2

Probably would be helpful if you said/ explained what hyperacusis is otherwise everyone is going to have to google! I have been tested via Audiology so I think there has been a connection made, I don’t think Neuros are that dumb!

3

Hi

I also have been tested (what a joke), rather poorly by a Consultant who said “nothing wrong with your hearing it is the MS” and discharged me.

No explanation of what might be done to help me.

Neurologists frequently acknowledge sensory overload but do nothing to help. Much of the time because that is what they don’t have - time.

Cheers

Moira

4

I am not sure I agree as VEP are done etc my Audiology exam was two hours long, if you aren’t presenting with audiology symptoms then you wont be referred to ENT then Audiology I wouldn’t have thought! You can have audiology symptoms that aren’t necessarily linked to your MS. Am sure this has been posted before less ave read it on line somewhere. Not sure I like the idea of someone ‘lurking’ on a forum to collate info without consent either. If you weren’t happy with how you were tested then its always worth speaking to your GP and asking to be referred on. It is a shame that stuff is so long winded and that we don’t always get the attention and checks that we feel we need or rightly deserve. On here there seems to be peeps that are really good at pushing for and receiving the care they need and then there are others, like myself and you that feel we are fallen by the way side. The pressure people are under working for the NHS means that I doubt things are going to change drastically, having worked for the NHS and obviously being poorly means I can see both sides. Mich x

5

Hello, I had hyeracusis when I became unwell last year. The noise of the radiator, next door neighbours at night and my housemates making noise during evening and night was unbearable. I also was suffering from an ear infection and had a head injury at the time.

MS, ear infections and head injurys can cause in hyperacusis so I think I may have had a triple dose. Nasty stuff and it made me anxious.

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Hi Lenney Saw your posts before, what is Hyperacusis? Ta very muchly Mich x

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Hi, as someone who is almost totally deaf in one ear, your post interested me. I have an ENT appointment soon.

I hadnt heard of hyperacusis and had to have a quick google. I didnt see the mention of MS being a possible cause though.

Please can I question your use of the word life limiting? I didnt read anything about that either.

MS is not generally thought of as a terminal condition. Life limiting to me and the local hospice I use to go to, means terminal.

Therefore I think we must be careful which words we use to describe something, as some members here may be a bit more than upset when reading your post.

I am, of course, open to being told different!

luv Pollx

8

Hello, Hyperacusis means heightened acoustics ( increased sensitivity to noise). It can be a symptom of MS, my MS nurse and neurologist have confirmed this. If it has not been mentioned much before then that may mean it only effects a minority of people and not all the time. I had a VI nerve palsy (double vision) at the time I had it. So of course my brain was functioning right. Once my double vision was gone then I was much better regarding noise senstivilty.

If you look on the following page on the MS Trust website at the end of the first sentance it mentions hyperacusis in MS.

9

I most definitely suffer from hyperacusis, though I didn’t have a name for it till reading the ‘noise’ post also current. To be fair to the OP, I do actually see this as a ‘life limiting’ symptom, which doesn’t mean life shortening, but seriously limiting in what we can do in our lives while we endure this. I am unable to go into work, to shops, pubs or busy towns, to a large extent due to the dizziness, poor balance and anxiety that these noisy environments trigger in me, though I am fine sat at home in my sunny garden, or walking my dog by the river. I spent most of today hiding from builders with excruciatingly loud tools and radio! Gxxx Ps, Not sure why everyone is biting this guy’s head off, seems a genuine enquiry to me,

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My reply was supposed to say my brain was not functioning right.

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Hey Lenney does anyones brain function right? :wink: I had my tests for balance etc in April Audiologist said there were exercises available for my balance which she wanted to start me on straight away…but didn’t want to interfere with Neuro and ENT so looks like I am waiting till see Neuro in July as to whether will be referred for exercises. oooh it’s July already only till 31st to go!! I would defo push GP or Neuro oringinal OP to get referred to ENT or Audiologist…soooo long and blinking drawn out process int it!! Michy Moo x

12

Hi

Thank you for your messages. I am sorry that it has taken so long for me to respond but I have been working on a major solo exhibition which is now running in Lincoln.

Hyperacusis is often a result of damage to the accustic nerves for people who work in a noisy environment, drummers etc.

In my case lesions in both Hemispheres mean that all noise is intensified, making life extremely limited. I cannot enter a shop which has overhead music, go down a high street because of shops/restaurants playing loud music. I could never go near a betting shop or play a gaming machine. A visit to the theatre or cinema is impossible. An emergency vehicle passing is excrutiatingly painful as is clapping, children screaming and shouting, people who talk loudly, fridges, printers…

I now use ‘Quies’ ear plugs which help but I am still time limited and have other problems such as my bodies intollerance of vibration. I feel all the nerve paths in my face which can lie dormant until a breeze or draft comes along. On top of this neuropathic pain down both legs and arms and I wont mention everything else.

Getting information out there to help others is now an important task for me and I hope others will start talking about sensory overload which includes the above. I believe that many have these life limiting problems and that talking about them with others is a great help phsycologically.

Cheers

Moira