Comments on my life and meniere's disease: Meniere’s disease and the burnout question

I have had menieres since I was 19 (im now 58) the...

2012-02-20T11:59:01.242-08:00

I have had menieres since I was 19 (im now 58) the first attack was very scary I had been using a steam iron and suddenly the room was spining and I couldnt stop being sick ..after that my attacks mostly started in the mornings sometimes two or three a week sometimes with two or three weeks in between ..then controlled for a while with stemetil (or maybe a remission) but if I stopped the stemetil they returned ..then the stemetil stopped working and I had an op ..decompression of the sac in my inner ear..this along with stemetil controlled the attacks for a number of years..but in my 40's after a very stressful marriage break up my menieres returned with very severe attacks and instant drop attacks my hearing had gone by this time and strangely whenever I tried to do any ironing (with a steam iron) I would get a drop attack ..luckily it was when I had put the iron down but I often wondered if it was the steam from the iron or the motion of ironing that helped bring on an attack.
After several hospital admissions following prolonged attacks and vomiting I had a Labrintectomy in 1998 and this has stopped the attacks.. so I dont know about burn out but they did become more severe and progressed to drop attacks (but I had remissions in between) for me the two surgeries were life savers.

I have had Menieres for almost seven years. I hav...

2011-10-28T16:52:19.359-07:00

I have had Menieres for almost seven years. I have increased my fluid intake for another medical reason. I seem to be improving with my menieres. I have followed all the treatments and am continuing them. I also believe it can retrigger itself. I keep down salt to a healthy degree and keep off caffeine. I am on a suitable diuretic and also on some Valium. I have Serc and stemitil on hand. I also have a good friend I can call in an emergency. I do the reserch and am a member of the nationion body of the menieres association. Maria mariagl@bigpond.com

SueM, I understand. My brother-in-law is my poster...

2011-09-27T09:50:23.370-07:00

SueM, I understand. My brother-in-law is my poster child for how totally inconsistent Meniere's is -- he's been in remission for more than a decade after a couple of drop attacks that put him in the hospital. He's deaf in one ear now, but he doesn't take any medication and has no symptoms that I know about.

And I'm beginning to think "burn-out" is just as variable as everything else about Meniere's: Some experience it, some don't. *sigh*

Peggy, I did get off of the subject quite a bit. ...

2011-09-27T04:32:50.363-07:00

Peggy, I did get off of the subject quite a bit. Yes, I had a long remission. However, my uncle is 95 years old and has had Menieres most of his life. For most of that time he has been in remission with flare-ups of MD during stressful times. It never burned out - by either definition.
Oh, and Lauri, I can't believe I forgot to tell you this but you might want to get your electrolytes checked if you're taking a diuretic. I ended up in the hospital after a 12 hour vertigo attack last month. I was losing conscienceness and didn't know where I was. The doctors said I was dehydrated and my electrolytes were all off from the diuretic I was taking, along with avoiding salt. Leading up to that attack, I experienced alot of confusion.

I was told when I was diagnosed, that this would e...

2011-09-26T20:02:47.448-07:00

I was told when I was diagnosed, that this would eventually burn itself out, it would take years, since I was 60 when I had my first attack, I figure, I will never make it to burn out. I know someone that has suffered with this for 30 years, his has gotten better and less severe over the years, but can still have an attack. So I think in some form, once you have Meniere's you will always have it. What is so hard for me to understand, that something different seems to trigger Meniere's but once you have it everyone has the same symptoms and experiences, a few differences. And the treatments are so varied and different. I know the weather changes really affect everyone, so have a safe and try to enjoy the beautiful fall weather that is coming.

Oops, I meant one of my comments for Anonymous, no...

2011-09-26T10:21:58.799-07:00

Oops, I meant one of my comments for Anonymous, not Elisabeth! Sorry...

SueM, I think what you're referring to is what...

2011-09-26T10:20:37.755-07:00

SueM, I think what you're referring to is what I think of as remissions. I know of people who have had remissions that last for many years, after an initial diagnosis of Meniere's with drop attacks, hospital stays, the works. That is a different phenomenon than burnout, I'm pretty sure.

Stress is absolutely a big contributor to the revival of Meniere's symptoms, and unfortunately, it's hard to manage your stress when your Meniere's is very active. It's a bit of a Catch 22. But taking control of your life can help a lot, if only to keep you more positive while you are working your way through a bad patch.

Elizabeth, don't let the participants on this blog make you panic. Meniere's is very different from patient to patient, and as others have pointed out, the folks on this web site have extreme and intransigent cases, for the most part. Which makes sense, because those are the people who need to talk about it the most, being rather desperate for relief. Your situation could be much better than what you are reading here, so "keep calm and carry on."

I find the only way to deal with Meniere's is to take care of myself to the best of my ability, do extensive research, see the doctor regularly, and take it all one step at a time.

I feel lately as if my life is on hold, with the Social Security Disability application in a long waiting pattern and no relief from some nagging symptoms that are hanging on. I'm trying to find ways to change my life to continue to have a fulfilling existence, but it's a heck of a challenge.

Lauri, I also have memory problems and find myself fumbling for words all the time. I have attributed that to the fact that I spend far more time at home than I like, without many people to talk to or work to keep my brain active. It's hard not to get buried in coping with the disease, and I think that can slow our thinking!

hello sue great post regards ali

2011-09-26T09:04:20.274-07:00

hello sue
great post
regards
ali

Lauri, I have had the problems you describe with m...

2011-09-26T07:32:29.474-07:00

Lauri, I have had the problems you describe with memory and problem solving but I related it to stress, not Menieres.

The people that I know that have had Menieres for ...

2011-09-26T05:18:14.852-07:00

The people that I know that have had Menieres for a long time, including myself (27 years) all have had their Meniere's eventually go away, their hearing restored and no vertigo or balance problems. My Meniere's is now back due to an enormous amount of stress, after 14 years of managing it well. Every thing the doctors told me in my 20s, and still tell me, was wrong. Everything my uncle and friend told me was correct. They both had Meniere's and said it went away but will come back after deaths of loved ones, loss of job, even menopause can bring it back. And, that is what happened to me. I was told (and I do believe this) that Meniere's is not cured, it is managed, just like diabetes. If you are able to get your stress under control and lead a healthy lifestyle, you will eventually get it under control. I have no doubt that I will this time around again. I know what the doctors say about burnout, and how you'll be deaf, etc, but they are wrong. Eat a gluten free healthy diet of fruits, vegetables, some proteins (chicken, fish, nuts) and no processed foods (I even make my own salad dressing); reduce stress (this might mean an antidepressant or therapy since it is very difficult to reduce stress once you are having attacks); exercise if you can (my balance is bad but I do what I can); take meds until it is under control (I take diuretic, meclizine, valium). Also, do everything you can to reduce allergies - I have a Hepa air purifier. Keep a food diary. There may be certain foods that cause a buildup in you sinuses or more fluid retention. For me it is wheat. Take your life back and get rid of the hopeless thoughts. Let Meniere's be your barometer to tell you when your life is SPINNING out of control and you need to do something about it or it will keep spinning. I hope I'm not making it sound easy, because it is not. It took me 8 years to get it under control the first time. After getting out of a stressful job and getting a divorce, Meniere's just went away. You have to be a great detective to find out what is causing it for you, physically and emotionally. Meniere's is a big question mark - don't know where it comes from, don't know how to cure it. We are the only ones have those answers.

From what I can gather most people I know with men...

2011-09-26T04:47:16.027-07:00

From what I can gather most people I know with menieres are really poorly for a few years or so when it hits, then they get much better. Even though it doesn't dissapear it usually becomes less severe and frequent with longer gaps between, so that a mostly normal life can carry on. I think it's only the severe menieres that's more persistent which is rare.

If your saying that's it I'm stuck with it like this or worse forever, I'd rather be dead and end my life right now! I'm 24 and had it for about 2 years. I hate it and it ruins my life for months at a time. So what kind of miserable future would I have, absolutely nothing to look forward to!

I think that this website is good and has a lot of useful information, but people need to be careful about how they portray this illness, it could dampen people's hopes and make then panic/ more depressed! I agree with ali that most people have the more stubborn form on here! It's so important to be positive to get through this.

Hello David, Nice to read this article. I believ...

2011-09-26T03:59:55.533-07:00

Hello David,

Nice to read this article.

I believe that the so-called burnout does not exist, you and Peggy describe it very well. Here in the Netherlands doctors are very reluctant to act in terms of medicines. I am sometimes somewhat surprised to read what is given to people with Meniere's in America. I only received medication in the early years, but it did not help me at all and for years I get no treatment or help. It is annoying, but I also understand that there is nothing to do, as long as they know so little about the disease.

Back to topic: I have Meniere's since 1992 and I had indeed calmer periods, but it is almost 20 years later and Meniere's is still going with me day after day. In recent years, the attacks are not as severe as they were but the effect on my body is much larger. I now feel more disabled than in the years of the severe attacks.
Three years ago, I asked the ENT whether I did something wrong. He said this to me: "It is a process of destruction of the inner ear, it is irreversible. For some people this process may take 4-7 years, for others twice that amount of years, and for some this process does not end. The body compensates as much as possible. I am speaking about unilateral Meniere's, but you have bilateral."

What annoys me of the regular information, is the story about the burnout. It is nonsense and that information should be changed. I appreciate your article and I hope it contributes to better information that is closer to the truth about Meniere's.
Thanks you!

This is off topic..but I swear I'm becoming re...

2011-09-25T20:19:03.587-07:00

This is off topic..but I swear I'm becoming retarded.
Is anyone else having serious problems with both memory, and their problem solving abilities?
Not to mention spacing out a lot?
I've noticed a decline as the years with Menieres have gone on..but it's become terrible in the last 2 months.
I also often find myself in the middle of a sentence and suddenly the next word I was about to speak is just GONE. I feel so foolish when trying to talk to someone.
This happened 3 times today and upset me..so I have to ask if anyone else has these issues?

Peggy~ I also figured burn out meant it would just...

2011-09-25T17:14:13.334-07:00

Peggy~
I also figured burn out meant it would just meet a final end..but if nerves can regrow..then why couldn't the vestibular nerve do that too? What would then happen..would the process just continue?
It's mind boggling. And scary.
Most times I try not to future trip so I don't add additonal stress, or become depressed.
I just keep convincing myself that at some point this will end..and enjoy every decent day I might have in the meantime.
It's all pretty crazy.

Seriously...anyone who has had long term intractable Menieres and experienced any form of "burn out" please chime in! We need your info.

Here is the link for the quote I found, David: ht...

2011-09-25T15:38:40.329-07:00

Here is the link for the quote I found, David:

http://www.menieresinfo.com/start.html#prognosis

I realized when I found that information that I had the wrong ideas about burnout.

It's easy to assume from the word "burnout" that Meniere's is done, and you don't have to worry about symptoms any more.

However, apparently it means that the Meniere's has done all the damage it could do to the physical structure of your inner ear, but your body will continue to react as it tries to compensate for that damage. Not very encouraging.

What have other people heard from their doctors about this, and what do you think about Meniere's "burnout"? What is the long-term lookout for people who have experienced the worst symptoms?