Looking for a Bit of Support and Possibly Someone Else with the Same Symptoms, Muscular/TTTS?

[AnnaMay1991]

Hi All

On and off since 2015 i've had a strange low inconsistent popping/fluttering in my left ear.
Sometimes it can last minutes, sometimes months (longest episode was 9 months.)

After numerous Drs appointments being told I was suffering with fluid in the ear, I got referred to ENT in Southampton UK to be told it wasn't to do with my eustachian tubes and was not because of allergies etc.
After a second ENT visit, the word Tinnitus was mentioned, had an MRI scan that was clear and sent on my way with the words of "just dealing with it."

I have just had another bout begin yesterday, my anxiety levels are through the roof and I'm really struggling.

I think from my own research, I am thinking it's a form of muscular tinnitus or TTTS.
Does anyone else suffer with this muscular fluttering sensation in your ears? It is not rhythmic and there is no pattern. I also can't see any reason as to why the episodes start. It isn't when i'm exposed to loud noises which is usually the common occurrence with TTTS.
I have noticed that the flutters are more constant when looking at a computer screen or phone screen and it's scrolling down or up, and also if I move my head around or something is waved infront of my eyes. Is there a connection to your eyesight and the small muscles in your ears? I can't seem to find anyone that has these same symptoms and I'm feeling rather lonely

There is always the worry that this episode will last forever and I'm not sure how I can cope it if does.

Sorry to be so negative.

Many Thanks

Anna

 

[Megatron]

Hi Anne,
It will not last forvever. Mine has never done - and is gone completely now. My symptoms were 100% equal to yours and began in 2006 an has slowly gone away (maybe have it once a year now max.)
Do not have so much time right now but can write more later.

Best Troels

 

[Septimus]

Hi Anna,

i think, i have the same problem like you.
How are you at the moment?
In advance my english is not so good and i hope i can express myself understandably.

I am currently very irritated if it is really TTTS, Stapedius Tics/Spasm, or similar. No doctor has an answer for this. My own research suggests the suspicion.
I would be so happy if I could exchange myself with people who have the same symptoms.
I am therefore totally confused and irritated.
The bad thing is that I have even thought, if I want to continue to live, if it gets worse. I've had so many doctors behind me and done everything without success.

I'm still not sure if it really is TTTS or Myocloni and so on. I have had these symptoms for four months now. It only takes a few seconds and comes several times a day. Currently almost every 10 minutes. But there are also days this happens only a few times. I can not think that someone can hear this from the outside.

The Symptoms are not clicks, no hum....more like a dull throbs, tremble, flutter, twitch, ... like eyelid twitch, .. but in the ear. Is is so difficult to explan. But there are also rare moments where it vibrates, rattles, like a machine gun, like rrr.rrrr.rrrr. But only for 5-10 seconds.

Otherwise I have no problems with the ears, listening is well.

Somehow I feel like I'm alone with these symptoms and almost go crazy. My life power becomes less and less.

An exchange with those affected would be very helpful to me.

Greetz, Septimus

 

[dingaling]

Dear Anna

You are not alone and a lot of ENT doctors in the UK do not understand/or have heard of TTTS (if this is what you have).

Can you remember what tests you had done apart from MRI (which would not show up TTTS problems)

Try these links and see if they relate to you

https://www.ncbi.nlm.nih.gov/pubmed/23571302

http://www.dineenwestcottmoore.com....misophonia#tonic-tensor-tympani-syndrome-ttts.

You will see that it is indeed anxiety related so anything you can do to reduce your anxiety (e.g. relaxation techniques, mindfulness, psychotherapy etc) will reduce your symptoms

 

[LulaLula]

@AnnaMay1991 how is it going?