Left Ear Twitching?

#31
@Erin0830 the doctor didn't mention ETD. Mine started out of nowhere too at first it felt like a moth was stuck in my ear and then it developed to a stronger spasm in the ear almost like a hiccup in the ear. Do you have it on both ears? I started with my right ear now it's both :(. I try to stay hopeful that it will go away but at the same time don't want to set myself up for disappointment. How long have you had yours?
 
#32
Oh my gosh you poor thing! Mine has been going on for about 3 weeks, so definitely not as long as you. I had no idea that you had it in both ears. I keep reading about Tensor Tympani syndrome and a surgery as a last resort to cut the muscles. Have you heard of this or mentioned it to your DR? I'm going to see if my ENT has heard of this before.
 
#33
Mine do too. Mostly when I'm trying to sleep. But I fell on my head when a child from a second story and my bones are pretty mangled. It's muscle spasms or nerve twitches. Could be related to TMJ. if your worried about it you could research that.
 
#34
@Erin0830 I've researched the surgery option and is not an option for me at the moment. The chances of it working are 50/50 and I know people who have gotten it done and it has made their condition worse. Maybe you can try muscle relaxers first.
 
#35
Thank you for all of your help. One last quick question, did your Dr agree with you that it could be Tensor Tympani syndrome? I'm just curious because I'm going to bring it up to my Dr, but I'm afraid he will think I'm crazy since I hear this condition is so rare. But what else could it be? Do you think that is what you have? I will try a muscle relaxant and you said Magnesium helped, right?
 
#36
@Erin0830 in my case is not TTS. I have middle ear myoclonus. The condition is very rare so don't expect much from doctors :(. The magnesium helped me but the muscle relaxer didn't, however maybe it will work for you everyone is different.

I know is tough :( I'm still an emotional mess because of it but we have to stay positive. Keep in touch and let me know what your doctor says! Are you in the US?
 
#37
Thank you for your support! I appreciate all of the help you have provided. Yes, I am in the US. How about you? I have read that Magnesium Oxide 400mg once a day can help. What kind of Magnesium did you take and how much?
 
#38
Also, I know you said there isn't much that the Dr.'s can do, however are they going to look me at me like I'm crazy when I mention this middle myoclonus? my family all does and its very depressing, I just want to go and talk to someone who believes this is a real thing. I'm almost afraid to bring it up to the doctor
 
#39
@Erin0830 if you go to an ENT he should know what middle ear myoclonus is. I took magnesium oxide for a couple of months and saw a little improvement.

I know how lonely ear problems can be since we don't look sick people can't understand what we are going through :(.

I'm in the US as well I know a doctor in Philadelphia that does the surgery for middle ear myoclonus.
 
#40
Have you spoken to him about it? I wonder what the success rate is? I am in Maryland, not too far from that. I know the surgery doesn't always work, but I wonder why if the muscles are cut? How did they rule out that yours wasn't tensor tympani syndrome? What is the difference between that and middle ear myoclonus? Also have you heard of anybody having the condition resolve itself? Sadly, I cannot find any success stories. I'm so sorry if I'm bothering you. It feels good to talk to someone who understands what I'm going through.
 
#42
@Erin0830 you aren't bothering me at all! I know how lonely it can be when I first joined here I felt like I was the only one with this problem. If you want to catch me right away you can PM me or when you reply here you can tag me by adding the @ in front of my name that way it will alert me that you tagged me here.

I didn't talk to the doctor but this other lady from here who has the same condition emailed her and she confirmed that she does the surgery. I don't recommend the surgery tho as I've heard more horror stories than successful ones. I'm not sure why the condition would get worse or not changed after the muscles are cut. There are other muscles too that can be spasming like the veli palatini. It's very hard for a doctor to determine which muscles are twitching when the condition isn't 24/7.

I don't have tts because I have both muscles twitching the tensor tympani and the stapedial muscle. Unfortunately I don't know anyone who's had the condition and it resolved itself but I don't know many with this condition probably like 4 people and there are thousands of people here so don't lose hope!!!
 
#43
When I searched for middle ear myoclonus on net, I found another option to probe for possible muscles involved without cutting them - botox injections to the suspected muscles through eardrum or by throat depending on their location.
Botox would totally disable the muscle for a duration of a few months at max, then it will steadily recover its function completely. The only irreversible outcome from such procedure I know of is associated with incision of the eardrum, so after it heals the way you hear things can change.

Botox injections as a treatment for myoclonus are common, but to find a doctor who performed/would perform injections to the middle ear area might be pretty hard. I have abandoned attempts to try these injections after discovering these possible complications with perforating of eardrum.
 
#45
Chelles said:
@ridgew how long have you had myoclonus? Is yours 24/7?
Click to expand...
I have eardrum vibrating rarely and I experienced my ears clicking a few times, these are the only direct symptoms.

But I also have a very strong feeling of pressure in ears which I suspect is some kind of pathology in muscles as well, probably myoclonus itself. The feeling of pressure I have 24/7 and it's stronger in one ear than another, and it travels between the ears in response to the noise or even randomly when it's quiet. I have this since 2005.
 
#47
@Chelles okay thank you. Thought I was bothering you for a minute! Did you know why magnesium oxide is recommended vs magnesium citrate? Also how did you know exactly which muscles were twitching? Did the Dr see the muscles twitching? Of course when I went it wasn't doing anything so the dr couldn't see anything.
 
#48
@Erin0830 I tried both forms of magnesium but experienced a little bit of relief with the oxide, the bottle said it was for muscle and nerve health.

The doctor couldn't see the muscles twitching either but you can research online and find the sound that matches what you hear; for example stapedial makes a clicking sound while the tensor tympani sounds like a tympani drum.
 
#49
Okay thanks, mine, I'm almost sure is the Tensor Tympani. Going to try the magnesium today. I'm just so depressed. My fears keep spiraling out of control, I'll keep losing sleep, I won't be able to function at work, I'll lose my job, etc, etc,
 
#51
When it gets set off, it will last anywhere from 30-60 minutes. Then calms down, then a few hours later will set off again. I know people have this so much worse than me. But I have terrible anxiety and my biggest fear is that it will continue 24/7
 
#52
@Erin0830 that is my biggest fear too!!! But mine is way worse because it can go for 15 mins (which is rare) to 12 hours or even days!! I hate that feeling makes me panic thinking it's never going to go away :(
 
#55
@Chelles I'm so sorry you are going through this. I feel so bad for you because I know how crazy it is driving me. I hope one day it will go away for you. I did see on another site that some lady had it for a year and then it disappeared. She said to never give up hope. I saw that a little while ago while trying to find more information.
 
#57
I have had these symptoms for the past year after attending an extremely loud guitar festival (standing next to an amp without ear plugs...). Ear fluttering/spasming, and ear fullness in right ear...I also feel liquid moving sometimes in my ear, but nothing ever comes out. The doctors have not been able to assist.

Some days are better than others. Yawning, burping, swallowing, and hiccuping especially aggravate it, and can cause it to spasm for hours... I especially find that EXERCISE and CAFFEINE worsens my condition. On the good days it doesn't spasm at all, given I avoid those triggers. Sometimes it can be VERY bad - especially when it spasms during the sleeping hours, because that makes it impossible for me to sleep.

I should also add that I did undergo hearing tests but did not find any disparities or hearing loss at least within the first couple months of the trauma..even though my ear does feel clogged.

@Chelles - this whole time I thought I found my answer (Myoclonus, or the tensor timpani muscle - to which surgical procedures have been effective). But if it is the veli palatini...I'm not so sure.

I have not read/encountered many cases like mine - but I am 100% sure it was caused by the noise exposure, and not stress or the like. I am a musician, so you can imagine how it's affected me.
 
#58
ridgew said:
When I searched for middle ear myoclonus on net, I found another option to probe for possible muscles involved without cutting them - botox injections to the suspected muscles through eardrum or by throat depending on their location.
Botox would totally disable the muscle for a duration of a few months at max, then it will steadily recover its function completely. The only irreversible outcome from such procedure I know of is associated with incision of the eardrum, so after it heals the way you hear things can change.

Botox injections as a treatment for myoclonus are common, but to find a doctor who performed/would perform injections to the middle ear area might be pretty hard. I have abandoned attempts to try these injections after discovering these possible complications with perforating of eardrum.
Click to expand...

Hi ridgew, thanks for your entry in this discussion. If you're still around, I wanted to ask you where have you read about these issues with incisions in the ear drum. Were they patient complaint reports? Academic papers?
 
#59
Chelles said:
@Erin0830 I've researched the surgery option and is not an option for me at the moment. The chances of it working are 50/50 and I know people who have gotten it done and it has made their condition worse. Maybe you can try muscle relaxers first.
Click to expand...

Hey @Chelles how are you doing with this, has it gotten any better? Hopefully you're still around to see this message, but I suspect I have a middle ear muscle myoclonus of some kind and that it may be an important part of my startle sound sound hypersensitivity. I wanted to ask you who you know that got worse off from the operation, and who you know that got better? Do you know them in person, by word of mouth, by doctors, or through the online forums? If the only testimonies available are in archived threads in forums, maybe its a question of reading them in depth to see what really happened, something that might have gone wrong? For instance, its known that if you cut the TT it can grow back into place soon after.
 
#60
ridgew said:
I have eardrum vibrating rarely and I experienced my ears clicking a few times, these are the only direct symptoms.

But I also have a very strong feeling of pressure in ears which I suspect is some kind of pathology in muscles as well, probably myoclonus itself. The feeling of pressure I have 24/7 and it's stronger in one ear than another, and it travels between the ears in response to the noise or even randomly when it's quiet. I have this since 2005.
Click to expand...

Would you classify this ''pressure'' as a tympani drum that jumps zaps you with a small latency just after a sound begins to hit you?
 

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