Comments on my life and meniere's disease: What is the biggest problem about Meniere’s diseas...

@Anonymous... kelownagamermom gave me a good chuck...

2011-11-23T18:45:01.746-08:00

@Anonymous...
kelownagamermom gave me a good chuckle too. We need those. Everything she said about stress is right on.
I relate to your reading worries.
I have had worsening Nystagmus in the last 6 months, even when not in full vertigo. They call it spontaneous Nystagmus. Oh Joy.
But I share your LOVE of reading, and I'm having more focus trouble too. Scary.
My Son was 15 when I got Menieres. It hit super hard & super sudden.
I did my best to be as present a Mom as possible, and he pretended to understand..but I just don't think anyone who hasn't experienced the FULL involvement of Menieres can 'get it'. Especially Teens, who are in such great physical shape, and particularly when their Mom was normal one day and then wasn't at all the next.
I actually drove my Son and his gear to a friends for a Birthday sleep over while I was in a vertigo attack one time, because we couldn't find someone else to drive him, and I wasn't going to let him down. (again)
Thank God it wasn't far away and I wasn't in one of the really bad attacks..but still a white-knuckler for me. As a single Mom you can get desperate to try and be there for your kids despite the Menieres.
So I guess the best thing is to do what we can to the best of our now more limited ability, and let them know we may not be as dependable ...but our love is still as huge.
Oh..here's a laugh..one thought that hit me when I realized my sight was worsening was..ok, I can get the audio books~second thought that hit me was..crap,not if my hearing ear goes.
That's what's such an enormous bummer about this disease..it effects so many things.
Hang in there!

hello the truth is laugh and the world laughs with...

2011-11-23T18:27:36.346-08:00

hello
the truth is laugh and the world laughs with you, cry and you cry alone"
ali

@kelownagamermom ... thanks you made me laugh. You...

2011-11-23T15:12:31.608-08:00

@kelownagamermom ... thanks you made me laugh. You are exactly right. The stress sucks! All of the posts are absolutely true. If you're not worried about doing a good job at work, then you are worried about keeping your job. People don't get what it means to not feel good because they don't get what it means to have meniere's. The fogginess, the concentration issues, the trying to keep going when you feel like you can't keep going. Just trying to get through the day without the disease beating you. The vertigo, the off-balance feelings, the nystagmus. You all know what I mean. This disease has even taken away one of my most loved hobbies ... reading. I find it very difficult to read. If anyone has tried a Nook or something similar and has not problems I would like to hear about it. I have a teenage son and I just want to be a normal mom for him. We all do the best we can ... if only other people would do the best they can to try to understand and have a little empathy.

Thanks Peggy. I actually took a Meniere's fre...

2011-10-22T06:43:00.950-07:00

Thanks Peggy. I actually took a Meniere's free day for my husband where I didn't even bring it up. I think I am stressing him out too much. I am wondering if I have the right dr. I get these terrible headaches with the ear fullness and pain so I am taking Topamax. I get the swirls and spins but not the vertigo to the extent you are talking about but I have lost hearing already in my left ear and it the fullness and pain is moving to my right ear. I am wondering if I have the right dr. He is a neurologist and I have been thru every test he could think of. But he keeps giving me these really off label drugs for the ear pain that my insurance keeps declining so I am just dealing with it cuz the Topamax is just keeping the headaches away. Any opinions. Just feel like a test subject a little.

Lauri, that is wonderful news. Doesn't it help...

2011-10-18T14:24:37.080-07:00

Lauri, that is wonderful news. Doesn't it help to have a doctor who relates to you as one human being to another? I'm glad you feel you have a better support system now, and I really hope your right ear takes its sweet time going downhill.

I have another add-on to big Menieres problems, an...

2011-10-17T19:38:28.687-07:00

I have another add-on to big Menieres problems,
and that is how stressful it is for some of us who have trouble with the Dr. we have, or in finding one who might help.
I left the last Dr. I was seeing, and today found a WONDERFUL ONE!!
Even though it is agreed upon that there isn't anything more they can do for me, it is so uplifting and such a relief to now have a Dr. who "gets it" and treats me with understanding, kindness and respect. It feels like a load has been lifted just to know he has my back, cares, and will listen. Thank God!
For those out there suffering through a Dr. who treats them as less than human, and dismisses the symptoms this disease brings...keep on till you find a better Doctor.
Don't give up. The support alone makes it easier to deal with Menieres. :)

Peggy~
Finally, right? The hearing test today shows dead left ear, and slight drop in hearing right ear. (go right ear! Hang in there!)
My new Dr. has scheduled VNG testing for NOV. 2nd, so we will see what the inner ears are up to. He can't do any more, and we agree that no further surgery will help, but he will make sure I have meds I need, and will watch the ears closely.
I feel at peace tonight. :) :) :)
Lauri

I really don't think mine would have settled d...

2011-10-16T09:28:01.100-07:00

I really don't think mine would have settled down without the labyrinthectomy last October. Hard to believe it's been a year already. But I found out this morning that I'm not as well recovered as I thought -- I tried to go to choir rehearsal for the installation of a new rector at the church I used to attend, and by the time rehearsal was over, I was a total wreckage. I had to sit for an hour before I could drive the short distance home.

I'm glad you are seeing the new ENT tomorrow. He might very well have something to suggest that could help! My prism lenses will be ready sometime this week, in an adorable and rather funky new pair of frames, and I'm quite looking forward to that.

I took one thing away from the choir practice debacle... at least I don't feel like a fraud who should be looking for a job now. I know I'm not ready. :(

Thanks Peggy! The symptoms really are full blast r...

2011-10-15T17:13:55.076-07:00

Thanks Peggy!
The symptoms really are full blast right now..hoping it cycles down soon.
Glad to hear yours have settled down.
I hear you about it sounding depressing.
You can't ignore vertigo, unfortunately, but I try not to think or talk about it any more than I have to. ( except with all of you, since we share like experiences)
I see the new ENT on Monday. I realize there's probably nothing more he can do right now, but I am hopeful he will at least be understanding and open minded, and will retest so I can see exactly what the inner ears are up to.
My new mantra is, "come on remission!" :)

Lauri... :( I'm so sorry, you've been hav...

2011-10-15T14:15:54.100-07:00

Lauri... :(

I'm so sorry, you've been having a horrible time. It sounds to me as if your symptoms are going FULL blast, whereas mine are much less severe than they were this time last year. I do sleep, and although I've gained about 20 pounds since all the "fun" started two years ago, I'm not as bad as I could be in the weight department.

It's complicated at times figuring out which people you can tell the truth, and which ones you have to tell that you are "fine." I've learned the hard way that many people feel very uncomfortable hearing anything about it, while others can handle more. Even so, I try not to say too much, because it sounds depressing even to me!

I'm SERIOUSLY glad that you guys aren't lo...

2011-10-14T18:16:28.057-07:00

I'm SERIOUSLY glad that you guys aren't looking ill...I'm jealous, because frankly, I look like hell.
My eyes are constantly pink rimmed and/or bloodshot (probably from Nystagmus) and I have terrible dark circles & puffiness underneath.
I gained almost 50 pounds between the lack of exercise I could no longer do, and the steroids I tried.
Thank God I am now getting the weight off, but I still don't hardly resemble the person I was pre-Menieres.
I think the stress and lack of sleep also play a big part, along with just plain having too many attacks too often. No recovery time.
Most people I run across can see that I don't feel great..but I agree..it is difficult trying to explain the ramifications of Menieres to them.
My pat answer is usually "I'm fine", like many of us do. It's easier.

It is frustrating, because somehow we all expect t...

2011-10-14T10:31:39.403-07:00

It is frustrating, because somehow we all expect that when someone is sick, they will take on the appearance of someone who's unwell. In a way, it's as if looking fine means you aren't really sick after all... So when someone tells me, "Well, you LOOK great!" I feel a little bit as if they aren't taking the problem seriously. How bad could it be, if you look good, right?

And yes, there is a ton to learn about, Tess. Hang in there, keep in touch with your doctors so they know what is working and what isn't, and try to get some family members and friends to understand what you're going through. It's better if you don't have to go through this feeling like you're all alone.

Milady Send me an email if you have an inquiry tha...

2011-10-14T08:13:02.043-07:00

Milady
Send me an email if you have an inquiry
thanks
David

Inquiry, please contact me.

2011-10-14T06:15:16.438-07:00

Inquiry, please contact me.

I agree that you do look so normal. Not many peop...

2011-10-14T02:30:11.659-07:00

I agree that you do look so normal. Not many people have ever heard of Meniere's before so they do not understand it much. I was just diagnosed myself and struggle daily with medication to keep the symptoms under control while struggling to work daily. I am sure there will come a time when I will not be able to stay at the job I am at now - that is worrisome and I am trying to prepare for that. There is so much to learn about.

I just was diagnosed after a year of trying to fig...

2011-10-14T02:25:37.236-07:00

I just was diagnosed after a year of trying to figure it out. My biggest struggle is that you do look so normal. I go thru my whole day thinking "okay, what can I do to not make my head hurt more". Constantly worrying about the brain fog and trying work efficiently still is so stressfull! Am I going to lose my job because I can't do this anymore? My ear hurts all the time and now it is going to my other ear! More stress.
And it is so hard to explain to people just what Meniere's is.

Kim, I just had the shunt surgery about 2 1/2 wee...

2011-10-13T21:19:34.313-07:00

Kim,
I just had the shunt surgery about 2 1/2 weeks ago. Recovery kind of sucks, it took about two weeks for the pressure (mostly swelling from surgery) to go away. Now I feel relief most of the time. The pressure comes and goes, but I'm Ok with any relief I get. Most Dr.'s aren't in favor of this surgery anymore because they say it's to ineffective. What most people are doing now are the gentimicin injections. I chose to have surgery first because the side-effects of the injections. I have a small child and cannot be unable to care for her if I'm dizzy for months at a time. You should talk to your Dr. about all your options.

There's a holistic dentist named Tom Maguire w...

2011-10-13T12:36:04.446-07:00

There's a holistic dentist named Tom Maguire who is all over the amalgam filling link to Meniere's. I don't know what to believe.

Amalgam fillings are one of those things that polarize opinion, with many saying they cause all manner of health problems, and others pooh-poohing it and saying they are perfectly safe. I don't think enough studies have been done to prove anything, but the anecdotal evidence is interesting.

There was a story earlier this year about a conductor in Boston who swears that his Meniere's symptoms vanished completely when he had all his mercury fillings replaced. Instant remission. But that makes me wonder... we all know Meniere's is subject to unexplained remissions that can last for years. So what can we be sure of here?

I'd like to believe that changing my fillings would be the answer to my Meniere's symptoms, but I DID have all my amalgam fillings replaced about 10 months ago, and my symptoms are unchanged.

Maybe it's just one more of those things about Meniere's that are completely different from one person to the next? But it's an interesting idea to explore.

Hi John I haven't looked into that but I will ...

2011-10-13T11:09:14.157-07:00

Hi John
I haven't looked into that but I will do some researching.
thanks
David

David, Have you investigated the possibility of a ...

2011-10-13T11:02:43.733-07:00

David, Have you investigated the possibility of a dental amalgam connection with Meniere's? John

yeah, it sucks! I am dizzy 24/7 too and always of...

2011-10-12T17:10:28.395-07:00

yeah, it sucks! I am dizzy 24/7 too and always off-balance. Some days it gets 50-60% better that full feeling in my left ear goes down and I feel so much better only to get disappointed because it comes back full force 2-3 days later. Is there a surgery for this, I have heard about shunt surgery? I have had it for 8 years now and have 3 small children I am so depressed. Everyone tells me to be positive, please they haven't lived with this.

The hardest thing for me is if Meniere's attac...

2011-10-11T15:57:10.920-07:00

The hardest thing for me is if Meniere's attack happens at a really unfortunate time. For example, I was a bridesmaid at a wedding and I had an attack during the reception (thankfully not the service). But, I was terrified I was going to have an attack during the service.

I am homebound and bedbound by another disease, but when I go out, I am always concerned.

Jamie, that sounds incredibly familiar. I am the s...

2011-10-11T06:06:47.205-07:00

Jamie, that sounds incredibly familiar. I am the same way now, with daily dizziness that can get worse at any time. Mine is pretty much 24/7 now, and I'm beginning to think it's never going away, but now and then I will reel and have to hold on to something or someone for support. I drove myself to my doctor's appointment yesterday (only five miles) and was very nervous, hoping nothing would happen.

And I agree with everyone who has mentioned the stress. It's horrible never knowing what is waiting around the next corner to pounce on you.

As Lauri said... its hard to pick from all of the ...

2011-10-11T04:23:37.328-07:00

As Lauri said... its hard to pick from all of the issues that come w/ Meniere's. Still, personally, I've adjusted to the hearing loss and a hearing aid has helped a little... I guess in someways I've also adjusted to the sudden vertigo attacks- and so have my kids, even as severe as it can become.

However... I do seem to have daily bouts of dizziness and imbalance that's almost unbearable. I can be out and have to suddenly hold on to a wall to not fall. Even walking around the house, yard, anywhere... I suddenly feel wobbly and dizzy and need to hold on to something. It's not rotational vertigo like the attacks, but imbalance and everyday. I try not to drive often unless I know someone can come get me if I won't be able to drive back- and I have 3 young kids.

Well, I guess that's the most difficult thing for me right now. Has anyone else experienced this?

I recognize most things everyone writes, that we h...

2011-10-11T03:59:06.132-07:00

I recognize most things everyone writes, that we have in common. Eventually, my biggest problem is this ongoing process of being less able to do anything, in all aspects.

For me it's stress, physical and emotional. I&...

2011-10-10T20:01:10.182-07:00

For me it's stress, physical and emotional. I'm concerned about going billateral. And right now what I hate the most is the way I'm constantly thinking about it. Like when you have a head ache, you keep thinking about it until it goes away. It's exhausting. And then when people ask how your feeling it's just easer to say "I'm feeling fine" because that's the easer response then trying to explain yourself and what the desease is and how it affects you physically and emotionally because NO ONE knows what menieres is. I feel like I should wear a sign sometimes.