Searching for People with Twitching, Fluttering, Rattling, Inner Ear/Eardrum; Suicidal Thoughts

Germanicus

Member
Author
Apr 22, 2018
3
Tinnitus Since
01/2017
Cause of Tinnitus
Unknown
Hi,

I am currently very desperate because I have been having so strange twitching, fluttering, vibrating, rumbling in my left ear/eardrum for about 4 months. A feeling like my eardrum was trembling.
It is several times a day, takes about 5-10 seconds. If it is strong, it reappears in about 10 minutes. At best, after 1 hour. Comparable to an eyelid twitch.

I have had similar symptoms in the right ear for over 20 years. These occur only with certain sounds and tones. Then it rattles in the ear like a machine gun.

No doctor has an answer. I feel so abandoned and alone because no one can say anything. It's kind of hopeless.
It is already so that I have suicidal thoughts. I'm beginning to have no strength left

It would help if I could exchange with people who are struggling with the same problems.

Thx. I really hope that affected people will contact me and tell me their experiences.
 
Sounds like middle ear myclonus or tonic tensor tympani syndrome. They are a twitching / contraction of the middle ear muscles. It can be in response to sounds or just happen for no apparent reason. If it is that, it's not dangerous or damaging - just annoying.

A benzo like clonazepam might help relax the muscles. I know it can relax mine.
Or a muscle relaxant like cyclobenzaprine, but I haven't tried it, so can't vouch for it. Discuss it with your doctor or an audiologist.
 
Hi,

thx for your answer. Do you have also this myclonus?
Yes, but more TTTS. Mostly fluttering in response to some sounds. Sometimes bigger thumps out of nowhere. Sometimes a complete contraction for days, resulting in temporary conductive low frequency hearing loss, due to sound not being related properly into the cochlea. It's horrible.

Sometimes it all goes away. I consider it to be because of overly sensitive or dysfunctional response of the muscles to sound. They contract to protect the cochlea from possible damage, even though the sound is no where near that level. Often quiet sounds trigger mine. It's involuntary, but there is a psychological aspect to it.
Myclonus might even be a nervous twitch type thing. Often people also get muscle fasciculations all over the body - I certainly do when stressed out.
 
Yes that is incredible, horrable, ... how do you master your life so?
How can you sleep? Can you relax? I find it terrible when it pounders in my head.
 
Hello :)

I am really sorry you're going through this and I understand how frustrating and hard it can be, especially with your Docs being so dismissive, but just try to hang in there and don't give up. :-/

It's important not to forget, as irritating as it is, some things are just idiopathic. They happen and no one knows why or they come and go or whatever, but trusting your instincts imo is always important.

For almost a year I was apparently having atypical panic attacks. I don't think they were trying to be like malicious or whatever, bc in all fairness I am bipolar and previously non-compliant, also I was 27, but I knew something wasn't right.

Should be fine and is fine are two diff things.

In my case I was actually having seizures, though mostly in my sleep so I was more like waking up all disoriented covered in sweat with a fever and some super bizarre symptoms. I've only had about 8 really disruptive episodes while I was conscious, not that I knew what they were, so it all seemed really random.

In my case one of the causative factors is SLE more commonly referred to as Lupus. No one, including myself ever considered seizures until I was finally diagnosed as they are common in the early days of the disease. They're not your typical Grand Mal but partial frontal and more recently temporal lobe seizures, so basically very diff than what most ppl think of as seizing.

The other factor seems to be stress as a couple more so resembled "pseudo-seizures" rather than epilepsy. They are nearly identical to reg seizures so it took time to separate them.Pseudo doesn't mean ur doing it on purpose or whatever, it just means it's not neruological but psychological in nature, for example my migraines seem to be heavily involved. This is something good to be aware of, bc the treatment is totally diff. Theyre still seizures so can be dangerous, and if we're being honest it does sound kind of insulting, but it's not supposed to be.

I tell you this bc while I'm not sure if you have any other bizarre symptoms, its a possibility and important to determine and usually treat the underlying cause.

Also, I'm not sure if u have reg tinnitus too, which I have had it for over a decade, but a real clue that it wasn't simply that was the change in what I was hearing coincided with the onset of the seizures.

That being said there are deff other causes for this too. Some are kinda serious, a dissected carotid or vertebral artery, which can lead to stroke and is more typically classic pulsatile, some not so much, ear infection, and then there's always idiopathic.

Obv, I'm not a Dr. and more serious conditions are rarer, its more likely to be what you see in the comments above, but when I finally had my head MRI'd I got some answers. There's the Pituitary Tumor, which is TSH so thyroid involvement, and hyper intensities that led to the EEG, but just before that I was super ready to throw in the towel, bc I was truly starting to feel absolutely insane.

On a similar note, bc I've previously experienced slightly different but similar weird noises and sensations, which were preceded by the obvious cause of actual machine gun fire, so have you recently experienced any sort of head/ear trauma?What youre hearing now might not be exactly what I've been hearing with the seizures. Those episodes always went away eventually and the caliber influenced the severity and length of time, like 50 cals were usually the worst, but that was always more fluttering rather than like drumming plus somehow like faster?

I dunno but what I experience now is more akin to any other kind of muscle twitch common with seizure just bizarrely happens to be my ear.

Again, I know it's frustrating but answers aside, alleviating some of the "side affects" can really help your mental state, which is so so important. Anxiety can exacerbate or even cause so much stuff. I would like to strongly suggest seeking a reliable mental health professional in the most sincere and understanding manner possible.

I'm not trying to be insulting or anything of the sort, as someone that happens to be very sensitive when it comes to Such suggestions I can't stress that enough, but your depression seems to be very severe, especially bc suicidal ideations. That is something you should never ever ignore, and if it helps alleviate the twitching all the better .

Background noise deff helped me enough to at least sleep a little. It doesn't have to be a white noise machine, mostly just competing noise in general, but not sleeping can make alotta things worse as well.

I'm afraid this is a bit disorganized or hard to follow, so sorry, but I hope it maybe helped even just a little. There are so many possibilities, some more likely than others. Mine happens to be a bit random and to be honest I'm not sure how sure they are that it's absolutely that, but at the very least if you need to talk or just vent I'm here.

I truly hope you're feeling better and you get some answers.
 
Hi,
thanks a lot for your encouraging words. Psychiatrist is almost impossible. Under several months you do not get an appointment.
You just feel left alone. Can not say how long my strength will last.
 
Try laying off caffeine or any stimulants for a few days. Does it go away? Mine does. Caffeine causes mine and won't subside until caffeine out of my system.
 

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