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11 June 2013 @ 05:32 pm
Hello  
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
 
 
 
Sayga: sp-camerasayga on June 12th, 2013 03:06 am (UTC)
I wasn't going to comment because I joined this group when I was being tested for Menieres, but I was diagnosed with Mal de Debarquement Syndrome (MdDS) and a non-related hearing loss with tinnitus instead (the dual diagnosis threw everyone). But then I saw you're in Portland and I am too. So hi! Sorry to hear about your diagnosis. There is a Meniere's group on Facebook that is full of really nice people. Some of them are having luck with the low sodium diet, others aren't. I couldn't handle a diuretic at all (my doctors thought maybe I had a very abnormal case of Menieres, so at one point, they treated me as though I had it to see if it would help. It didn't, so that really clued them in I had 2 problems, not one). I got really faint on the diuretic, and within 2 days I had severe kidney pain and couldn't even stand. So I went right off that!

As far as phases, having a chronic illness like you I can relate, though maybe not on exactly the same level. Menieres can be much rougher than MdDS, from my understanding of the two, because at least I know my attacks are going to come after I travel, and yours are probably completely random and unpredictable. But another chronically ill friend told me once that it's normal to go through the stages of grief, and then when you're back to acceptance, it's normal to go through them all over again. And I've definitely noticed that. There are times when I don't have symptoms and I think I must be fine, that nothing could really be wrong with me really, etc (denial), and there are times I'm just depressed about it, and others when I'm angry about my lack of doctor support in the past, or my limitations, or whatever else. And so forth. So, it can take a long time to learn your limitations (especially if you're stubborn like me and try to convince yourself you don't have limitations when you clearly do), and accept your limitations, and there will still be times you challenge them and end up suffering because you didn't stop when you should have, and going through the grief cycle is apparently normal too.
McKavianmckavian on June 12th, 2013 11:45 pm (UTC)
You are welcome here, too; we do not discriminate. Life is hard enough without being an asshole to someone who does not deserve it. =) Perhaps your observation will also shed light on new ways of thinking.
redwolfgirl: pic#80323120redwolfgirl on June 14th, 2013 05:38 am (UTC)
Second that motion. this group when it was going was never just meniers people but dizzy people. Living with a lifetime condition can be tough so no discrimination of my condition is worse then yours we all need to lean on eachother a little at times. For us dizzy people more then at times ;)
absous: a bit battyabsous on June 14th, 2013 07:02 pm (UTC)
Hi fellow Stumptowner! did find the group on FB and it seems to be pretty informative so far. I am glad to have gotten as many responses on here as I have I wasn't really expecting any, so this is wonderful!

I've been doing a lot of thinking back about things,like my lack of grace and what I like to call the year of sprained ankles, where one or the other, or both were severely sprained at the same time and wonder if that could have been a part of this, or some of those embarrassing times when I have been out with friends and been cut off because I seemed intoxicated, when I really hadn't had much to drink, etc. Things have been going on for years that I just laughed off as my being a klutz.

I'm trying to stay positive though and for the most part and doing ok with that. It's only been a week though, so who knows what's going to happen.