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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 07:46 pm (UTC)
Thanks for your reply =)

I do not plan on letting this beat me. I have had raging tinnitus for years and diminished hearing for years and have been through quite a lot in life already. This will not be the thing that beats me. The words "disease" and "no cure" are daunting and sometimes a little depressing. but I think I have a good support system and my friends have always been there when they thought I was just their clumsy deaf friend.

I am glad that people are living their lives with this. I have, over the course of the last week ran into a number of people online who have lost a lot of their life to this and it's good to see people that haven't =)
redwolfgirl: pic#80323120redwolfgirl on June 15th, 2013 12:44 am (UTC)
I don't call it a dieses but a condition. It can be disabling for some heartining for others and just plain annoying for all. Glad you got a support system for my long term friends I am their designated drunk person/klutz. But you can't give up your life to a few dizzy spells (says the person who has very bad attacks and falls down a lot)
I cave for my job so I really can't let it get to me. I don't go into a few of the caves because my being dizzy is not safe for the guest but luckily my work works around it. You just need to find your own dizzy rhythm.
It is ok to get a little depressed just try not to stay there. I did that for months after I was diagnosed and luckily my mom snapped me out of it. I have had to give up things but I think I have gained others in return.. This condition has taught me to look on the bright side of life and cherish so many things. But I am 12 years in. I am far away from how I was at 5 years or even ten.
I still fear but a few years ago I started telling people about why I am dizzy and it helped the fear go away.
absousabsous on June 15th, 2013 01:01 am (UTC)
What a fun job! I have always wanted to do that, not professionally, but just for fun. Spelunking(that's where you dive in the caves too, right?) sounds really amazing as well! Have you done that one as well?

It's kind of funny because I am actually the last living member of my family and the rest of them all died of some really obscure form of cancer or another weird disease that caused some freak anomaly to happen fairly young. When I was diagnosed last week I was kind of surprised because it's not really deadly. Then I started doing research and found out about the "drop attacks", which fortunately I have not experienced, and I started laughing a little (I kind of have a morbid sense of humor). I told my husband that I figured it out. Sure, I have a weird "disease" that isn't terminal, but I am probably going to get one of these drop attacks at the top of a big flight of stairs and that is how I am going to die as a side effect from Meniere's.

He is familiar with my family genetics and actually kind of giggled as well. Then he told me not to be around stairs alone. Hahaha!
redwolfgirl: pic#80323120redwolfgirl on June 16th, 2013 03:03 pm (UTC)
Wow just wow. Sorry about your family.
Actually I have fallen down a flight of stairs during a drop attack more than a few times. Have never been hurt beyond a few bruises and my pride.

I am a caver not a spelinker you couldn't pay me enough to combine caving with diving.