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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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lizzyliz143 | @lizzyliz143 | Sep 24, 2022

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. Not sure what’s happening been to 4 ENTs and they can’t help. Developed severe depression and anxiety as a result. PLEASE HELP!

REPLY
willows | @willows | Sep 25, 2022

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.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 25, 2022

Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her post asking about any medications you are on? Might this be related to ototoxicity?

I'm also bringing @born2write and @variegata, who have experience with middle ear myoclonus into this discussion.

If posture is a contributing factor, have you considered PT?

REPLY
3 replies
born2write | @born2write | Sep 25, 2022
In reply to @colleenyoung "Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her..." + (show)
@colleenyoung

Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her post asking about any medications you are on? Might this be related to ototoxicity?

I'm also bringing @born2write and @variegata, who have experience with middle ear myoclonus into this discussion.

If posture is a contributing factor, have you considered PT?

Jump to this post

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.

REPLY
2 replies
lizzyliz143 | @lizzyliz143 | Sep 25, 2022

Thank you so much for replying. I tried magnesium (on it till this day) and had no relief at all. I also tried acupuncture with no success. I have an MRI Oct 7th and neurologist apmt on the 6th. I pray and hope I get some answers. It’s been extremely tough. 😔

REPLY
lizzyliz143 | @lizzyliz143 | Sep 25, 2022
In reply to @colleenyoung "Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her..." + (show)
@colleenyoung

Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her post asking about any medications you are on? Might this be related to ototoxicity?

I'm also bringing @born2write and @variegata, who have experience with middle ear myoclonus into this discussion.

If posture is a contributing factor, have you considered PT?

Jump to this post

Thank you so very much!! Any information I can get will be very helpful. I’m trying to rule things out at this point.

REPLY
lizzyliz143 | @lizzyliz143 | Sep 25, 2022
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.

Jump to this post

I am so sorry about your symptoms. I’ve noticed I started to develop a ringing sound that comes and goes. It scares me to have to deal with yet another symptom on top of all the ones I’m already dealing with. I am not taking any medications at the moment, only taking magnesium but that does not seem to help.

REPLY
lizzyliz143 | @lizzyliz143 | Sep 25, 2022
In reply to @colleenyoung "Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her..." + (show)
@colleenyoung

Hi @lizzyliz143, I see that @willows has some further questions for you. Did you see her post asking about any medications you are on? Might this be related to ototoxicity?

I'm also bringing @born2write and @variegata, who have experience with middle ear myoclonus into this discussion.

If posture is a contributing factor, have you considered PT?

Jump to this post

Sorry, I forgot to include on my last reply. I will look in to PT after my MRI.

REPLY
joylynn22 | @joylynn22 | Oct 19, 2022
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.

Jump to this post

Hello, @born2write, I also have ear thumping which lasts most of the night with rapid flutters. Does yours thump rapidly and how long does it last? Can you tell me how you are coping with this feeling? it is uncomfortable. Thank you so much, I'm in a panic and thinking the worst. Help!

REPLY
dlm | @dlm | Oct 19, 2022

How to get rid of water behind eardrum

REPLY
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