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rhb

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Reply with quote  #1 
I had sudden sensorineural hearing loss in early December which was accompanied by some mild disorientation and fullness sensation.  I did two rounds of prednisone (was not a pleasant person on that stuff) and that stopped the hearing loss.  However, I started to have great sensitivity to certain noises - especially clicks, doors shutting, a paper bag, or a bag of chips sounded very loud.  The exaggerated sounds were and still are accompanied by a sensation of a squeeze or seizure between my ears as if my brain were a muscle and it was in spasm.  There is an accompanying whooshing sound that is inside my head but sounds like a strong wind blowing outside.  I went to the Mayo Clinic in Rochester, in part because I have neuropathy and positive indication of auto immune dysfunction in my blood work.  I don't have an acoustic neuroma, MS, or something like lupus.  My hearing is almost back to normal range but the tinnitus, diplacusis and what I feel like is some form of hyperacusis remains.  The symptoms are always present although some days are better than others.  There are also associated vestibular issues - balance problems - but I am most interested if anyone has had the sensation of a squeeze or spasm in their head.  That is the one thing that neither the neurologist nor the ENT's at Mayo had heard of.  Thanks for any replies or insights.
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Margy

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Reply with quote  #2 
The sensations in my head when I hear sudden sounds as you mentioned are like spasms, yes. If you read about tonic tensor tympani syndrome, you can see that there is a muscle in the middle ear that spasms with noises. I also experience small spasms of facial and neck muscles. I think these are a part of the increased sensitivity to changes in sound, and that it is a part of the general startle response. But why? That remains a question.
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Dafni

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Reply with quote  #3 
I've previously had a sudden temporary hearing loss after a loud pop in my ear. some sounds became painful. I've always felt something was wrong with that ear, but nothing shows up on the scan. some years later, with onset of many other symptoms, I've had diagnosis of vestibular migraine, and my head gets feeling like its being compressed from the inside.
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rhb

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Reply with quote  #4 
Those are both good guesses.  The stapedius muscle is so small though and I feel this all the way from my forehead to my ears.  Maybe a vestibular migraine but it is so frequent - 100's to 1000's of times a day.  I don't get vertigo (spinning) but it is disorientating and can leave me unsteady on my feet. There also seem to be a range of severity.  The stapedius is controlled by the 7th nerve right?  I have a bit of a facial tic above my eye.  It's an involuntary flutter of the eyebrow area.  If a virus or autoimmune impacted the 6th, 7th and 8th nerve, could that cause all of these things?  my vision is good except that my eyes have become very irritable, red, and dry.  if it was a virus, why would these symptoms remain after the hearing has returned?

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Margy

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Reply with quote  #5 
I'm talking about the tensor tympani muscle. If I remember right, it is controlled by the trigeminal nerve. Not enough is really known about all this, but what I have experienced over these two years is very similar to what you are describing.

When I hear sudden sounds, like the crumpling of bags, the clicks of doors or silverware, or engines with metal striking metal repeatedly, my ears hurt, but also I feel a spasm or flinch inside my head, including my forehead, behind my eyes, in my throat and above my upper teeth or roof of my mouth, up in my temples to the top of my head, and in the back neck muscles. My eyes get very tired, dry, and scratchy. I have a little bit of sore throat.

On the balance issue: I have good balance and never get dizzy, but sounds coming fast at me ( like engines or other sharp sounds repeating) make me feel like my head is getting jerked around. Occasionally I even sway in that direction when sounds come at me too fast. These sensations hit at the base of my scull and behind my ears.
My eyes feel very tired because I feel that muscles above and behind my eyes are flinching so many times.
I think too many muscles are reacting too much to sounds. But I have never heard of anyone putting this together. The best one to read is Myriam Westcott of Melbourne, Australia. She has seen many people and has put together a research paper on the syndrome of symptoms people get from acoustic shock and tensor tympani syndrome.
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lildaniellexoo

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Reply with quote  #6 
This suddenly happened to me 1 year and 2 months ago. Verbatim to how you described it. Like a "whoosh" some deep inside my ear/head blowing through to every sound I hear. Only in my left ear. I truly can't believe that this is even a possibility of something that could happen, and never stop from the second it started. It has driven me to the point of insanity and I am considering severing the muscle because I can't live the rest of my life with this issue. I'm going to be 30 and have a lot more life to live, but with this issue I'm not doing much living. Mine has progressively gotten worse to the point where voices and my own voice causes it to spasm. I just saw Dr Dennis Poe and he confirmed this is my issue, but couldn't see if actually happening during his examination. He said that massaging the jaw muscles can help so I will try this, but I'm sure it won't change anything.
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AnthonyO

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Reply with quote  #7 
Thank you Margy for your very thorough, very detailed and well thought out post. Your description of Hyperacusis and other various auditory processing symptoms, are so very exact; spot-on-the-mark. Some who have posted here in past years, would simply call this Misophonia, said & done. This is clearly, undisputingly not true. The symptoms you describe, many of us on this board, including myself, experience. Some do so experience them often, some infrequent, but they are real, very real and are Neurological in nature, and not anxiety or fear-based, even though some would lead us to believe otherwise. Sure, such symptoms can lead to anxiety and PTSD-ish type symptoms, which I experience horribly, but let's be clear, our auditory systems are seemingly mis-translating sound & vibration stimuli incorrectly and processing such signals to manifest themselves as pain, discomfort, disorientation, muscle contraction and nerve irritation. My only hope and prayer is that current medical and neuro-physiological science can step up to the plate, as they have successfully for many other neurological conditions, and pave the way for a foundational & lasting remedy for Hyperacusis. And I hope my friend Margy, that you might be one of the first, to reap that benefit.

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rhb

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Reply with quote  #8 
Thanks for the replies.  It seems that the best description is vestibular migraine.  Regardless, I believe that Anthony is right - it is neurological.  I have peripheral neurological symptoms too.  I have demyelinating neuropathy so it makes sense to me that whatever is impacting my muscular and sensorial nerves in my arms and legs could be the same thing that is effecting my 7th and 8th nerves.  What that root cause is remains a question.  Virus?  Autoimmune? Bacterial infection?  The inflammation is there for some reason.  Just don't know why.  I also believe that there are times when the nerves continue to send "strange" or exaggerated symptoms even after the root cause is gone.  Take shingles for example.  Even after the virus is gone, the rash is gone, and there are no signs of shingles, some people continue to have the excruciating pain.  This may be the case with chronic Lyme disease too.  The Lyme may have been killed off by the antibiotics but the symptoms persist.  For those of you who have vestibular migraines/hyperacusis:  Have any of you had success with gabapentin? ?  I just started taking it.  Have any of you had a lumbar puncture or learned anything from a test of spinal fluid?  I am having a lumbar puncture next week.  Finally, do people get better, does it remain for life, does it get progressively worse?  Has this caused any of you to change careers or stop working?  I appreciate your answers as it is helpful to know how others have handled this challenge.  Much thanks!
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Margy

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Reply with quote  #9 
Thank you, Anthony. We all should keep talking about this. It doesn't seem like many objective scientists are helping out with unraveling this mystery. I do wish that neuroscientists would focus on researching this condition and also giving out information.

I mean, really, we have to deal with a world around us that is so uninformed and misinformed and generally confused about everything relating to this condition that we have to deal with every waking moment.

Even the word, "misophonia" , is misunderstood, poorly defined, used in wrong ways, and leads to more misunderstanding than understanding. It started out as a needed word to describe "an autonomic and limbic response" and ended up reduced to a small subgroup of that broad category of responses to sound. I would love to read Jastreboff enlarge upon his theory of this, because I think it contains much of the truth about TTTS, Acoustic Shock Dysfunction, and the painful symptoms most of us feel. But the popular media (which also informs doctors, apparently) has "misophonia" redefined as only that phenomenon where people get angry about certain sounds. This is not what I have, and it sounds to me like there is a lot of "autonomic response" among us that is leading to pain and other troublesome symptoms, and we are running in circles even to describe it.

It's not "pure hyperacusis", whatever that may mean. But it's part of a familiar syndrome; familiar, that is, to those of us who have it.

(I think in my case that hyperacusis was the beginning of it, but then everything slowly escalated, including hyperacusis and this other set of symptoms that has no name but is a familiar syndrome that often goes along with hyperacusis.)
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lildaniellexoo

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Reply with quote  #10 
I agree with all the above posts. This is absolutely 100% something neurological. My ear spasm (in response to sound and my own voice) started after a series of severe SEVERE headaches that lasted every day for two months straight. I've had an MRI, a CT of my sinuses and another of my orbital and everything came back normal. I never got another headache again after that period of two months, but then the ear spasm started.

I was seen by a very good neurologist in NJ and right away he knew it was the TT and Stapedius muscle that was causing this. He also tested me for shingles virus and Lymes which are both associated with this issue, and both were negative. Then his next words that followed were "but there's nothing that I can personally do".

I did visit Dr Poe after waiting 7 months to see him. It was well worth the wait. He informed me there is a "highly specialized test" that came be done in order to detect exactly which muscle is malfunctioning, and then have itnsurgically cut if you decide to. Unfortunately the doctor who operated the test wasn't in that day so I will have to go back. I do have a top doctor (Neutotologist) that is willing to cut the muscle for me, but I keep going back and forth in fear till become worse.

Ive tried every single thing possible to make this stop but to no avail. But I don't stop trying until this is stopped completely.

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rhb

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Reply with quote  #11 
Has anyone had success taking anti-seizure or anti-depresent meds? or has anyone ever had and learned anything from testing their spinal fluid?
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lildaniellexoo

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Reply with quote  #12 
I was put on Klonopin for 5 months, as this was something that is known to dull the ear spasm. It is also used for managing anxiety, which I had due to the neurological symptoms I was having. I was so upset I wasn't able to sleep (and I have ALWAYS been someone who sleeps a lot and very easily). I am not an advocate of drugs, so I was very hesitant. However, I needed to try anything to fix this so I went on a very low dose (.5). I took quarter pill at first and moved it up to half, but the side effects weren't fun. I was able to sleep, but I felt very out of it from the pill. My doctor wanted to get me up to a whole pill but I couldn't do it. Coming off the pill wasn't easy either. My mood was affected greatly and I had withdrawals on a very low dose. Also most importantly, it didn't stop my spasms. They were still loud and strong as ever. I am glad I tried it though, it was nice feeling calmer and less anxious all the time from this issue.
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Aplomado

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Reply with quote  #13 
Quote:
Originally Posted by rhb
Has anyone had success taking anti-seizure or anti-depresent meds? or has anyone ever had and learned anything from testing their spinal fluid?


I took some anti-siezure med, forgot the name unfortunately, that did nothing for me.  No harm either though.  It was an experiment, on of the ladies on the board had a temporary respite after taking it, I forget her name, so I decided to try it.
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rhb

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Reply with quote  #14 
Thanks for the feedback.  How about acupuncture for vestibular migraines?  Had my first session today.
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