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11 June 2013 @ 05:32 pm
Well, this group doesn't seem to be bustling, but not much in livejournal land really seems to be much anymore really. I guess I will introduce myself and see if any of you respond anyway.

My name is Michele and I was just diagnosed this last Friday. My hearing has been an issue for many years as well as the tinnitus of varying degrees and crazy noises (would you believe I even get cello at some points?) the vertigo did not start until this last February. I have been bounced around between audiologists,neurologists had MRIs, CT scans and no one could tell me anything. Finally I got an ENT that knew what he was doing and he gave me the good/bad news.

I say good/bad because he said if I adhered to a strict diet that there was a possibility that I could recover some of my hearing, which would be so amazing (I am really trying to not get my hopes up too high) but wow, this is forever, which is so overwhelming. He started me on diuretics and potassium supplements and wants to see me in a few weeks for bloodwork and again for another hearing test in a couple of months. I almost fainted in the front yard this morning because the diuretics made my blood pressure drop incredibly low (I am a pretty tiny person) and now I have to go back in and we have to figure something else out.

I am wondering how many of you are using a strict diet and how long did it take for the symptoms to ebb and to what degree did they go away and id you took the pills, did you have to try a bunch of combinations before you found the right one or were you able to do it with diet alone. Did you go through a phase where you felt like it was all just too much? Did you have support or did you grab the disease by the balls and do it alone? 
Current Location: Portland Oregon
Current Mood: curiouscurious
Current Music: Coil=The tenderness of wolves
absous: a bit battyabsous on June 14th, 2013 07:22 pm (UTC)
Thanks for your reply =)

I haven't really noticed much with the weather here, but Portland doesn't get many big storms. It's just wet or not wet usually and sometimes the sun comes out.

I have never been a huge caffeine drinker and due to my migraines, my doctor put me on Topamax a year ago and that makes everything carbonated taste flat, so I have been soda,beer,cider free since then. I do like a good margarita now and then however, but I have never been one for salt on the rim, in fact, I have never been a big salt person at all, which is why this kind of baffles me a little. I have an organic garden, I can all my own tomato sauces, vegetables and rarely use salt when I cook and if I do, it is usually only a teeny amount of sea salt. Luckily my doctor referred me to a nutritionist, they may be able to give me more pointers.

Glad you made it through those tornadoes. I didn't see the first ones, but I was watching the second ones on CNN because I don't know much about tornadoes and thought it was time I learned about them. Those are really scary!

I am considering putting what I call a "gimp bar" in the shower since that seems to be one of the places it really likes to hit me. Above all, I'm also trying to keep a sense of humor about all of this as I see you are as well.
McKavianmckavian on June 24th, 2013 11:38 pm (UTC)
Sorry to take so long to respond. It's been crazy here. And now I am sick. Yay. But hey - today is my friday so I cam going to see how long I last at work tonight.

Sounds like you were doing everything right BEFORE you got hit with this disease/condition. I do not really have much to add to you diet wise. Other than if you are still getting dizzy being healthy and all, maybe you should start taking deep dish, all meat pizza and see if that helps with your dizzies. Hey - some times caffeine/speed slows down ADHD kids. Ya never know.

The funny thing is that I slept through all of them. I grew up in Tornado Alley and have dealt with them the way people from the West Coast deal with earthquakes.

You have to have a sense of humor about yourself. Morbid humor is still humor. I am the only one who would crack jokes to my grandmother about Alzheimer's while my grandfather was in a nursing home with it.

there is more I want to say, but am sick and am dizzy, so I will comment more later.

Be well