Ear Spasms, What Now?

[RonT]

Hi There,

My name is Ron and i am living in Amsterdam, Holland.
Since 3 months ago i have these spasms in my right ear sounding like a butterfly or thumping sound.
I have had it 20 years ago ,( I am 40 now) for a few days and it was gone , this time it comes and goes.
I have been to 2 Ent's one in Holland and one in Belgium , and they told me it could go away, but to be honoust i don't believe it.
I have a litlle company that stands still because of all this problems because i get panic attacks when it starts ( the spasms)
I was about to get married with the most wonderfull girl i have met in my life (she is 29) but having read a lot about this condition i think that will be unfair to her.
We were planning on having children what is her biggest wish but also that would be unfair because i am clearly not able to cope with my earspasms .
I have asked bot Ent's if they can use botox about which i read on the internet as a solution alot but they both said they didn't know about that option.
Sorry for my first (probaly depressing) post but i don't know where to go from here, i don't speak to friends or family about this .
I have talked to my gf about this but she didn't took it that serious because she said there will be a solution
somewhere.
That answer made me feel more helpless and alone....


Ron

 

[Atlantis]

Botox is a possible treatment for ear spasms. Have you tried other ENTs? Maybe you need to travel to another country for a better ENT.

 

[RonT]

Since my last post i was searching for a doctor in europe that would inject botox in my tensor tympani.
I found a dr in Germany ,but he uses botox to inject it around your ear what is supposed to stop Tinnitus.
After another long search i found a dr in Belgium that according to his staff would use the Botox.
I went there and first i had to talk to his staff and she said sure we can do it, but i will ask again to make sure.
I heard her talking to the dr outside the room and he confirmed that it could be done, so i had to do some hearing test first and then he would see me.
I was so happy i was thinking yess finally the solution!!!
When i met him after the tests he said i am going to put you on tegretol lets see what happens, when it won't work we can cut the tensor.
I asked him but i came here for a botox injection, he replied well we don't do that because when done wrong it can be life treathening.
There i was 300 km drive and back to nothing again, looks like somewhere someone is using botox as a solution but i can't find him(or her)

 

[AmericanJosh]

Since my last post i was searching for a doctor in europe that would inject botox in my tensor tympani.
I found a dr in Germany ,but he uses botox to inject it around your ear what is supposed to stop Tinnitus.
After another long search i found a dr in Belgium that according to his staff would use the Botox.
I went there and first i had to talk to his staff and she said sure we can do it, but i will ask again to make sure.
I heard her talking to the dr outside the room and he confirmed that it could be done, so i had to do some hearing test first and then he would see me.
I was so happy i was thinking yess finally the solution!!!
When i met him after the tests he said i am going to put you on tegretol lets see what happens, when it won't work we can cut the tensor.
I asked him but i came here for a botox injection, he replied well we don't do that because when done wrong it can be life treathening.
There i was 300 km drive and back to nothing again, looks like somewhere someone is using botox as a solution but i can't find him(or her)

Hi Ron, any update on your condition? How are you doing?

 

[Contrast]

is this TTTS?