1. < Ear, Nose & Throat (ENT)

Middle Ear Myoclonus and Neuropathy

Posted by lizzyliz143 @lizzyliz143, Sep 24, 2022

for past 8 months of back numbness, pain, shocks, ear flutters, thumping, pain, sound sensitivity, body spams/jolts, certain frequencies makes head/ears thump. Head feels numb sometimes and throat/ears crackle when I talk. Not sure what’s happening been to 4 ENTs/audiologist and they can’t help. Developed severe depression and anxiety as a result. PLEASE HELP! Any ideas on what can be happening? 😔all this started after work related strenuous computer work. Could it be posture issue? Nerve damage? Initially believed it was covid vaccine but now thinking it was long hours of work.

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koleke | @koleke | Oct 20, 2022
In reply to @dlm "How to get rid of water behind eardrum" + (show)
@dlm

How to get rid of water behind eardrum

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A tube in the eardrum.

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xenl | @xenl | Aug 30, 2023
In reply to @willows "Liz, wish I could help. You have not mentioned whether you are currently on any medications..." + (show)
@willows

Liz, wish I could help. You have not mentioned whether you are currently on any medications and if so, which ones. I have very loud tinnitus all the time. Some days the tinnitus causes my back, legs, and soles of my feet to buzz, as though an electrician current is going from my brain all the way down to the floor. This sensation I associate with the tinnitus which affects the brain. The pain and sensitivity I associate with my hyperacusis. The tinnitus is permanent and at present there is no help for it. I will continue to ring and buzz for the rest of my life I guess. As I get deafer the hyperacusis doesn’t bother me as much and habituation helps control it and reduce the pain. I take both pregabalin and amitriptyline twice a day and it seams to give me a small improvement in the tinnitus. I know some people are afraid to try these drugs, and I get it. For me, I am at the stage that anything that will help to reduce tinnitus is welcome and the lesser of the two evils so to speak.

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Hi Willows, it could be worth asking your doctor about Multiple Sclerosis, I have read that an electrical feeling in the back is common for people with MS.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 30, 2023
In reply to @xenl "Hi Willows, it could be worth asking your doctor about Multiple Sclerosis, I have read that..." + (show)
@xenl

Hi Willows, it could be worth asking your doctor about Multiple Sclerosis, I have read that an electrical feeling in the back is common for people with MS.

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Hi @xenl, I would like to add my welcome to Connect along with @willows, @lizzyliz143 and others. Do you mind sharing how you found Connect, what you were searching for?

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1 reply
willows | @willows | Aug 30, 2023
In reply to @johnbishop "Hi @xenl, I would like to add my welcome to Connect along with @willows, @lizzyliz143 and..." + (show)
@johnbishop

Hi @xenl, I would like to add my welcome to Connect along with @willows, @lizzyliz143 and others. Do you mind sharing how you found Connect, what you were searching for?

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I think I was looking for people who had tinnitus and what they did to learn to cope with it and also to put in my two cents worth as a person who has been coping with 24 hr a day tinnitus for many years.

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bethany1385 | @bethany1385 | Sep 13, 2023
In reply to @born2write "Lizzy, so sorry to hear about all the symptoms you are experiencing and wish I could..." + (show)
@born2write

Lizzy, so sorry to hear about all the symptoms you are experiencing and wish I could be of help. I have middle ear myoclonus, but all I experience is the thumping. I went on a a low dose of Magnesium (250mg) and that stopped my episodes completely, for now at least. Have you seen a neurologist? Your symptoms seem to indicate that some of the problem could lie in your neurological system. Just a guess on my part as I am not a medical professional. I also know acupuncture is used for all kinds of ailments. Again, a guess on my part that it could help. I hope you can find relief.

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I also have Middle Ear Myoclonus for a little over 5 years. I read it only last 5 years , so MAYBE it will disappear any day now (I can only hope). Been to multiple doctors and tests over the years and no one has heard of it. Mayo clinic is the only place I have seen it posted .
I guess I have gotten use to the "butterfly fluttering in my ear". No other issues , so I really can not complain as it could be worse. I do Yoga weekly and Tia Chi daily . Helps with my balance.

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