No Longer Lurking...

Hi!

I have lurked (do people even still say that??) here for a while now and finally decided to register and introduce myself.

My name is Emily and I’m a vegetarian, have an unhealthy obsession with The Walking Dead and have a pesky case of tinnitus (I’m trying to remember that I do have interests outside of this hellish sensation in my head). I have also recently been diagnosed with Meniere's disease. So along with the screeching in my ear, I have a whole other host of lovely new issues to contend with…

My tinnitus started out very mildly in 2012. In fact at first I only had it when I had a cold. I called it “the ocean in my ear”. I always knew when I was coming down with something because the gentle whooshing sound would start up.

Fast forward to the spring of this year and I was left with a mild buzzing that never left even when I was completely well. It was not too hard to deal with as it never got very loud. Also I was very busy finishing up nursing school (I’m an RN now) while working full time so I had a lot of stress and distraction.

Anyway, around May of 2013 I had a series of severe vertigo attacks that left me completely incapacitated for about an hour or two each time. Warning- don’t read the next paragraph if you don’t like hearing about bodily fluids.

The attacks always started with my tinnitus increasing in intensity and volume until I honestly thought I would die from it. Then I would get a sickeningly dizzy sensation like when you get off the worst spinning amusement park ride in the world. I would need to sit down immediately or know that I would be on my ass (or face) in a moment. After that I would have a lovely episode of projectile vomiting which always ended with me embarrassed, helpless (unable to walk much less drive) and hopeless. The first time it happened at work and people probably thought I was drunk or something. Talk about embarrassing. Luckily my full time job is in an office so it’s a little easier to hide than it would be on the busy med/surg floor where I work per diem.

Anyway, I won’t bore you with all of the details of the last few months. Basically, I ended up at an ENT who ordered a hearing test which I failed miserably. I am about 60% deaf in my left ear. I never even realized it…

We did the whole prednisone thing (which temporarily turned me into a violent psycho) and then the Valtrex thing (which gave me pounding daily headaches). I then had an MRI to rule out other nasties. Nothing helped and he referred me to a neuro otologist in Philly (I’m from Pennsylvania, USA). I went through a bunch of other testing (VNG, VRG, ECoG etc.). I was then diagnosed with Meniere’s. Yee haw. He put me on a low sodium diet, prescribed a couple of diuretics and gave me an intratympanic steroid injection.

I haven’t had any more vertigo attacks lately (fingers crossed) but the tinnitus has gotten louder and louder. I am starting to tumble down the slippery slope of depression and self-pity which I know is NOT an attractive place to be…

I have frantically been trying to identify triggers by documenting everything I do, eat, the weather etc. I can NOT figure it out. It’s driving me crazy! I have several suspicions but nothing concrete.

I know from reading other posts that the key to “beating” this is to stop fighting it and focusing on it but sadly I am not there yet. I am still in the whiny, pity party phase so bear with me! Anyway if you made it this far thanks for reading! I didn’t intend for this to get so long. I am happy to be here with all of you.

 

Hi Emily
Good job on introducing yourself. Try not to give yourself a hard time, it's a tough time. You've already seen it's a pit you're very likely to climb out of. I think also you can think of the pity thing as an outlet, it's what the forum is for after all.
I hope things get better for you very soon, we can call 2014 the year it all gets better for you, perhaps?
DD

 

Thanks for the welcome DD!! Yes, I hope that 2014 will bring the relief I need! Thanks!

 

Hi Emily,

I'm not that interested in bodily fluids but i read your whole post, have you heard about otonomy ?

Maybe you'd be interested in reading this PDF : http://www.otonomy.com/Otonomy OTO-104 P2b start Release Dec 11 2013 FINAL.pdf

 

Hi Emily
I'm a Meniere's survivor. I was dx ~ 15 years ago and the vertigo/dizziness attacks were particularly devastating. Fortunately now I'm in a much better place and it's tinnitus that only gives me grief occasionally. When it struck me I eventually found Meniere's support group which was a relief because I realized I wasn't a freak and wasn't alone. If I can offer something positive I would say that in time you should get to a better place and your tinnitus shouldn't bother you.

 

Lol I put the disclaimer in just in case anyone might have a problem with my projectile description...glad I didn't scare you all off!

Thanks to you all of you for your very warm welcoming!

James- thanks for the link I will definitely see if I qualify as a participant! I'm willing to try anything at this point.

Karen and Magpie thanks for sharing your experiences as well. I'm so glad to find a place where people understand!