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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.
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
redwolfgirl: pic#80323120redwolfgirl on June 14th, 2013 05:28 am (UTC)
(Warning I am dyslexic and try my best with spelling and grammer but don't always get things correct.)

First off welcome to the group and let me tell you a little bit about my meniers. I was diagnosed 12 years ago went through what you described at first many many test no answers then finally a diagnoses at the age of 14. It was good/bad news also I didn't have something really bad but this was for forever. They tried diaretics on me and it made my vertigo worse to the point of almost disabling me. They tried other pills until the point I was tired of being a lab rat and said I will do it on my own.
Groups and chat groups about meniers helped me. i found out say goodbye to caffeine since that is a trigger for attacks for many people. I also had to go on a strict low salt and sugar diet. I don't dare touch pork produces to this day since they have such a high salt concentrate and now pork since I haven't eaten it in 12 years makes me sick.
Potasium helps me I eat a lot of high potasium fruit especially oranges and bananas. Oh also dairy products such as milk seem to make me feel better when I am having an attack don't know why.

I have had to create my own diet since this condition varies from person to person. I have alot of bad attacks that send me falling to the floor but I don't let it stop me. I did go through a phase where it was all to much and unfair I was a freshman in collage and couldn't make it to my classes cause I couldn't stand up or walk to them. But at some point I said hell to this and fought against it hard. No matter how many times I fall I insist on standing back up. It is very important to me to at least get to my knees by myself after an attack then I may take a hand to get to my feet only then will I lean on others to walk. It is important to me so this silly dizziness doesn't swallow me whole.

I am a park ranger so I have to work dizzy and not let my guest see it. Don't let anyone say you can't do it because of your meniers judge for yourself. There are things I can't do but I tried first.

It is hard at the start, it sucks, but you will get to know you limits and than push them. This condition goes through waves of bad and good. I have been in a good wave for years now very few falling down attacks what I call a drop attack just consistant mild attacks and constant dizziness like I am perminatly buzzed. My hearing thankfully has only been mildly effected but the titinitus does suck. I hope they can get some of your hearing back they tell me mine will only continue to slowly degrade but I was partially deaf in one ear from birth so no big whoop for me.

If you need anyone to talk to please feel free to contact me here I am no expert just a long lived dizzy dam who has a few tricks to beat the dizziness and a few others to just not let it beat me.

I have had support keep a few confidants who know you have meniers tell them what you are going through and what to expect as you learn it yourself. My friends have helped me laugh through the tears, carry me home, and calm others when I fall. you don't need many but support that is physically there for you is the best especially when you just can't walk.

Hugs.
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.