I Wish I Only Had Tinnitus

[jonathanvg]

dont take it the wrong way but some of you guys are lucky with only T
i have TTTS and hyperacusis i wanna trade both for your loud T
i was pretty happy 6months ago till the TTTS and hyperacusis developed

 

[Karl28]

What is TTTS?

 

[jonathanvg]

What is TTTS?

tonic tensor tympani syndrome , it give me fluttering in my ears numbess in my cheek and neck tension in ears

 

[MichaelM]

I wish i had only Tinnitus, too. But what i got is Meniere´s Disease giving me somewhat every ear-related problem available. Severe Tinnitus, ear pain, aural pressure, hyperacusis every now and then, hearing loss for good, vertigo attacks that can last for 6 hours, balance disorder + snap/crackle&pop-sounds in the ears every almost every single second... put together they do cause anxiety, problems concentrating, depression.... but hey; It´s just a sound! it´s just an ear pain... "think positive" like they say everywhere. And drink lots of water like one doctor told me to do.

As long as it doesnt show it doesnt exist.

 

[LadyDi]

I feel for all of you. I more than once have said to myself, "thank god it's only tinnitus." I occasionally get brief dizzy spells and pray its not the beginning of Meniere's.

 

[Telis]

dont take it the wrong way but some of you guys are lucky with only T
i have TTTS and hyperacusis i wanna trade both for your loud T
i was pretty happy 6months ago till the TTTS and hyperacusis developed

I have the same...my TTTS keeps getting worse as of late. I remember it a bit at the start, then it faded. At about 4 months in I was ok. Now at 10 months my H and TTTS is really really awful. My right ear flutters for about 10 hours a day and my ears get that full stressed feeling along with stabbing pain. It all makes tinnitus so much harder to deal with. This is all so strange, still kind of in disbelief that this condition can actually be real. Blows me away.

 

[jonathanvg]

I have the same...my TTTS keeps getting worse as of late. I remember it a bit at the start, then it faded. At about 4 months in I was ok. Now at 10 months my H and TTTS is really really awful. My right ear flutters for about 10 hours a day and my ears get that full stressed feeling along with stabbing pain. It all makes tinnitus so much harder to deal with. This is all so strange, still kind of in disbelief that this condition can actually be real. Blows me away.

Wow you have severe ttts why dont you try trt ?

 

[Street Spirit]

tonic tensor tympani syndrome , it give me fluttering in my ears numbess in my cheek and neck tension in ears

I have the same symptoms right now.

 

[russiancarl]

@MichaelM Meniere's sounds truly brutal. It's so hard imagining another person's plight but in this case I really feel for you.

Have you looked into any alternative treatments? Or new drugs? I could swear I heard a new drug that came out over the summer that is supposed to be FDA approved for Menieres? I also remember hearing something about Dana White (the UFC guy) who succesfully treated his Meniere's with stem cell therapy in Germany.

Hopefully there is a cure for you. And for all of us.

 

[DutchGuy]

I wish I only had T and not H. I also don't want to me compare myself to others, but H sucks high hell.
Menieres totally sucks, I know a woman who had this.

 

[MichaelM]

@MichaelM Meniere's sounds truly brutal. It's so hard imagining another person's plight but in this case I really feel for you.

Have you looked into any alternative treatments? Or new drugs? I could swear I heard a new drug that came out over the summer that is supposed to be FDA approved for Menieres? I also remember hearing something about Dana White (the UFC guy) who succesfully treated his Meniere's with stem cell therapy in Germany.

Hopefully there is a cure for you. And for all of us.

Thank you for your thoughts. Meniere´s is surreal and can be brutal on some days, i dont know how to describe it, really. violent vertigo attacks is like being inside a fast spinning washing machine for hours.
MD varies so much and you never know what you are going to get when you wake up.

I have done a lot of reading about MD. I am not into alternative treatmens myself, being a sceptic with a strong scientific point of view towards life. There really arent drugs for this. Betahistine is the only one, it seems.

ENT i saw some weeks ago told me that there are doctors studying this disease, or syndrome as i like to call it. Maybe one day they will know more.

I know Dana White´s story. Those miracle cures almost every time involve big amount of money. I believe people treated with those experimental treatments can feel cured or feel almost anything. Mind is a powerful tool. Where there´s despair, there´s sure someone willing to sell something.

still, there is no cure for MD.

One day, hopefully, there will be.

 

[Jesse Pinkman]

Thank you for your thoughts. Meniere´s is surreal and can be brutal on some days, i dont know how to describe it, really. violent vertigo attacks is like being inside a fast spinning washing machine for hours.

Does it help to close your eyes? Or does it still feel like being in a washing machine?

 

[Viking]

Anyone has tryed SSRI medications to treat this condition? I am in great difficulty and my neurologist gave me SSRIs. Are only a few days but the situation seems to worsen even more. I hope it's only temporary. It all started 18 months ago using implants to correct the sensorineural hearing loss. They busted my whole nervous system.
Thank you

 

[Zimichael]

Uggghhhhhhhhh...you guys. Sounds even worse than T + H + Sound-Reactive T which is darn well crazy enough. So sorry. In case helpful or not known already, I scrounged this stuff below from the much confused (by Otonomy, and others) thread regarding a drug trial for T which was really for Menieres... [See https://www.tinnitustalk.com/thread...5-for-tinnitus-—-no-limit-on-your-onset.6365/ if interested].

~ This quote is from http://www.marketwatch.com/story/ot...-safety-study-2014-10-09?reflink=MW_news_stmp
About OTO-104OTO-104, which has been granted Fast Track designation by the FDA, is a sustained-exposure formulation of the steroid dexamethasone in development for the treatment of Ménière's disease and other inner ear conditions.

~ Then for those unfamiliar with it, the classic "Fast Track" definition:
TheFDA Fast Track Designationis a designation of theUnited StatesFood and Drug Administration(FDA) that facilitates the development, and expedites the review, of drugs which treat a serious or life-threatening condition and fill an unmet medical need. Fast Track designation must be requested by the drug company. The request can be initiated at any time during the drug development process. FDA will review the request and attempt to make a decision within sixty days.

~ And finally, for those interested, here is the link for the Otonomy Menieres trails c/o of general search at the ClinicalTrials.gov website:
https://clinicaltrials.gov/ct2/results?term=Otonomy OTO-104&Search=Search

Hugs and hopes, Zimichael

 

[MichaelM]

Does it help to close your eyes? Or does it still feel like being in a washing machine?

No it doesnt, unfortunately. I am unable to move at all during the vertigos. Cant focus my eyes on anything. Lying on the floor and waiting... for hours. But that´s MD by its very nature.

 

[Mike34]

tonic tensor tympani syndrome , it give me fluttering in my ears numbess in my cheek and neck tension in ears

How does one get diagnosed with this?

 

[xanaxvictim]

I wish I only had H, at least I can live out my life peacefully in a quiet remote place far from any noise.