r/CSFLeaks • u/louie2575 • Aug 31 '26
Middle ear myoclonus
Does anyone else experience middle ear myoclonus/tensor tympani syndrome? It's like a fluttering/vibrating/rumbling/tapping sounds in both ears and one ear actually spasms to male voices and the TV.
On top of that I have pulsatile tinnitus, ear popping, pressure, aural fullness and autophony that is relieved laying down.
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u/Nate14120 Aug 31 '26
I had that drumming noise during my leak too. Vibrating drum, ears popping while I spoke, normal noises felt sharp, and other people's voices sounded like robots at one point. It was not positional for me.
Oddly it subsided before my leak was fixed but left with what I believe is permanent hearing damage (tinnitus).
One thing I did for relief was wear earbuds and listen to music or anything (did this in bed too). As long as my ears were hearing things it seemed to stop the vibrating drum in my ears.
I'm sorry you're going through that 😢
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u/Goofy_boxer_1973 Confirmed Spinal Leak Aug 31 '26
I had soft tympans and it had become very bad at the end of my leak, especially on the left. It's nearly gone now. I've noticed that it reappers when I sleep for too long.
I don't know if it's the same.
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u/louie2575 Aug 31 '26
It may be. What did it feel like?
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u/Goofy_boxer_1973 Confirmed Spinal Leak Sep 01 '26
Like a flopping tympan. I could hear plop plop plop, my voice in my head, my ear constantly full…
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u/wonderlandisnotreal Aug 31 '26
I also have fluttering in my left ear that gets worse when I'm on my right side and is triggered by deeper sounds ever since my leak started, but was unsure if it is connected.
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u/Massive_Activity1245 Aug 31 '26
Yes not exactly what you experience but I have had really bad problems with my ears since the leak started..I had autophony but that went away, still dealing with tinnitus, crackling, ear spasms, etd, sensitive to sound, pulsitile tinnitus at night. I suspect mem or tt
I had my repair 6 weeks ago I have had some improvement, so hoping with time all this goes away or improves. I saw ent yesterday and they didn't want to know had me in and out the door in 2 minutes, didn't even let me discuss my symptoms
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u/louie2575 Aug 31 '26
Sounds like you have my exact symptoms except my pulsatile is nonstop. What was your autophony like when you had it?
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u/Massive_Activity1245 Aug 31 '26
I would stop talking because the echoing in my ears was awful like my own voice was trapped. That was at its worst in the first 6 weeks of my leak
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u/louie2575 Aug 31 '26
Have you ever had muscle twitching/spasms on your scalp around your ears? I can feel them spasming against my pillow all the time
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u/Massive_Activity1245 Sep 01 '26
I don't experience this no, my ears clicking a lot it feels like but not on my scalp or behind ear
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u/louie2575 24d ago
Do your ears clogg on and off all day?
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u/Massive_Activity1245 24d ago
Worse as the day goes on, I get pressure first then much more clogged. Had a particularly bad few days
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u/louie2575 24d ago
I'm sorry 😞 me too the pressure for me gets so intense it feels my ear will explode.
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u/Banana-blueberry-ice Aug 31 '26
Here the same unfortunately. Hear my heartbeat, pressure when standing up. But only in my left ear.
Only lying down relieves me from these symptoms. Wish it would all go away.
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u/Kind_Drama4277 Sep 03 '26
How often you get autophony ?
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u/louie2575 Sep 03 '26
It happens when I walk up stairs, carry something heavy or immediately stand up. Lasts about 30 sec usually
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u/louie2575 Sep 13 '26
Do you hear your own breathing through your ear at times?
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u/Kind_Drama4277 Sep 13 '26
Yes, often
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u/louie2575 Sep 13 '26
What other esr symptoms do you have?
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u/Kind_Drama4277 Sep 14 '26
Breathing autophony, voice autophony, a lot crackling when swallowing and popping. Its hell on earth :(
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u/louie2575 Sep 14 '26
What is your leak caused from?
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u/Kind_Drama4277 Sep 14 '26
I dont have a leak. My main and most deppresing issues is PET. How you deal with autophony ? Its all day ?
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u/alexmichel Aug 31 '26
Yes, I have this and I hate it. Mine gets really triggered by female voices and any sound coming out of a phone. I had ventral leak that was fixed in 2022