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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
McKavianmckavian on June 12th, 2013 11:43 pm (UTC)
Hi Michele!

I'm John. I've been at this for the last 9 years. I am a right side only Meniere's guy. I have most of the standard symptoms.

I would say 'glad to meet you' but I wish none of us were here.

So many questions! And each of us will answer them differently. So, here are mine: Diuretics did not work for me. At all. They just made me pee a lot, and not much else. Diets change with your body. What works today will not work in 5 years. As my symptoms wax and wain, it's hard to say THIS is the end all, be all solution. Some days I can drink a six pack of Mt Dew and be fine, the next I have a glass of low caffeine tea and am on the floor. Diet help, do not get me wrong.

Something you need to factor in that may not have been addressed is weather. If you have been in storms or where the air pressure changed rapidly, you need to take care. I am in Oklahoma City and when the tornadoes came through, it messed with my ear something awful.

Did you go through a phase where you felt like it was all just too much? - Honey, we ALL do. Some might not admit it, but we all do. Make sure your circle of friends and family know what's up. Let people know when you tell them that you need to sit down, you mean RIGHT NOW. I have had to be grabbed by collar and belt then frog marched to bed more than once. I was just lucky someone was there to do so. I am about to move out on my own again (long story) and I am worry about being alone, but I have done it before, I will be fine again.

Did you have support or did you grab the disease by the balls and do it alone? - again, this is a mix question - I fully suggest you bring your support up to speed. Don't whine and cry about it (I have done so often enough; it gets annoying) just give facts of what you need. Ultimately we are all alone within ourselves. How we deal with it is what makes us stronger. Or weaker. The choice is yours. I look at it as I am a cheap date. A 6pk of Code Red and a bag a cheetoes and I am done for the evening. =) I also make a killer Amaretto Sour that has both alcohol and caffeine. What you want to do and how you manage it is 100% up to you. Me? I'm an idiot. =)
redwolfgirl: pic#80323120redwolfgirl on June 14th, 2013 05:36 am (UTC)
mckavian is correct the weather especially the storms can play hell with the dizziness. For me I also have problems with heat if the temp outside is in the the 100 I am going down and not such a great day for me. Luckily in Portland just recently moved from near there to New Mexico this is not such a problem. (I have been friends with him here on LJ for years)
You will learn your triggers and I advise to stay away from them if you can. One of my triggers is the high pitched laughter or pain of small children which I do not stay away from I love the kids at my job and in my family to much.

absous: a bit battyabsous on June 14th, 2013 07:51 pm (UTC)
The high pitched scream of toddlers has set made me uncomfortable for the last few years as well. I have not been around it since the vertigo set in however. I wonder if that would trigger something now? I also lived in Austin for 3 years and couldn't tolerate the heat and had to move back here.

Wow. Both are things I would never have considered to be a part of any of this. What a madcap disease this is!
redwolfgirl: pic#80323120redwolfgirl on June 15th, 2013 12:36 am (UTC)
Yeah it is pretty funky and varies from person to person.
McKavianmckavian on June 24th, 2013 11:28 pm (UTC)
(pets wolfy)
redwolfgirl: pic#80323120redwolfgirl on June 26th, 2013 01:02 am (UTC)
*enjoys being pet*
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