I found out something rather amazing about Meniere’s disease. According to menieresfoundation.org there are two million people in the USA with Meniere’s disease. 2 million people with meniere’s, 1.4 with epilepsy and a half a million with Parkinson’s disease. So why is it that relatively few people know about meniere’s?
The first reason is that the disease itself is so undefined. At least with other serious diseases the medical field has a better understanding of causes and possible treatments. With meniere’s there is no cure and like I have said a million times it is difficult to say what brings on the attacks.
People with meniere’s look like they are okay most of the time, at least that is the perception with a lot of people. Those who aren’t familiar with meniere’s think that you get a little dizzy or light headed for a short period of time then things are back to normal. But that isn’t the case, the attacks could happen at any time and the spinning and the vomiting are something you just can’t describe. Another thing that people don’t realize is that after an attack you just don’t go back to what you were doing. I have been laid up for days after a particularly bad attack.
One more reason is taken seriously and this is important, not all doctors think that it is that difficult to live with. As a matter of fact one ENT told me to do exactly that, LIVE WITH IT. Thankfully I didn’t listen to him! Another doctor told me that at least I wouldn’t die from it. Well, that is good to know when you are lying face down on the ground and throwing up!
Wednesday, January 20, 2010
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19 comments:
You are right! My first ENT did the same thing, told me I had to live with it. While my kids were waiting at school for over an hour because mum couldn't get out of bed or down the stairs to pick them up. The ENT was even surprised when I said I had some questions about gent-injections or diets or other medications (I had read about on the web). And of course she didn't answer any of the questions.
Then I asked her how many M-patients she had. The answer (after soms calculations) was: five.
I think the spontaneous remissions also contribute to the lack of visibility. I've spoken to several people who have clearly had Meniere's or a very similar condition, but did not follow all the way through to diagnosis because it just went away.
Possibly also the lack of pain, swelling and so on also makes occasional sufferers think it's just something to do with stress, allergy, cold, stomach upset or whatever; if there was pain or swelling I think they'd see the doctor sooner rather than waiting for the episode to pass.
i was told by the first ENT i saw when i was 25 years old that "i would grow out of it." what??? i was so mad. he offered me exactly nothing in the way of treatment.
and you are dead on when you talk about people not getting this disease because we look like we're okay most of the time. i've lost friendships due to that misconception.
i'm so grateful to have such a great doctor now who believes in me and my disease.
Thanks everybody for the great and informative comments!
David
I have to chime in here. The ENT I saw gave me the standard treatment of diuretics, low-sodium diet, no caffeine, learn to live with it. That part about "learning to live with it" chaps me still and it was a year ago. In 2010 I will be seeking a new provider, one who will work with me. And I'll work my way through providers until I find the right fit. Nicki, I'm sorry you've lost friendships over this. I have been grateful and humbled by the support of my friends and family. I even had a client offer to come get me if I have an attack away from home.
Informing friends n family is key! I am advocating the viral school on this disease. I believe that so far they r the only ones who offer supported answers about Meniere's. It will be 29 years this year that i have had MD. Boy, am i sick of it all. I am in Stage 3 now, so at least the vertigo is not as bad as the first ten years or so. Wishing dizzy-free days to us all! Katey
thanks Katey!
I was told by my GP that my Meniere's would burn out in five years, i had already been suffering 9 years!!!
I wonder why he told you five years? thanks for the comment
David
Hi there, I was diagnosed with Meniere's 7 years ago. I control my symptoms (other than living with the wonderful constant ringing in both ears) by taking zanex at night and lots and lots of supplements during the day. They include ginko, grapeseed extract, b-12, lots of c etc...my question is now that I am back to researching again (took a break form it all) does anyone know of anyone doing any kind of laser light therapy on the mastoid bone? I have searched and searched and can find no comments one way or another. I crushed my tibial plateau 4 years ago and that has taken over in terms of focus. I'm using the light therapy for the healing and it's working. It's actually taking the pain away and I am able to walk through a mall again, albeit the lights bother me. So I'm just wondering if there have been any studies, has anyone tried this approach as I am considering trying for Meniere's. I am signing anonymous as it's late and don't want to go through all the sign up stuff! Best to all of us.
I hadn't heard of laser light therapy. If you find out something about it let us know, the more information the better.
thanks for the comment
David
Hi, I use to be a regular visitor last year (2009) and i stopped coming here after my vertigo subsided.It came back again recently but after my betaserc medications,it sort of cured within 3 wks.I came bck here again to see if you have by luck found some actual cure for MD.Cause I'm sure if anything cures MD,it sure hell will cure my vertigo attacks. I hope u find the cure becos I still am...
Hi Leeng,
I am sorry that you had another round of vertigo.
keep in touch and good luck
David
My husband has MD. We live in Oklahoma where we have alot of weather changes. These always bother him and he will lose days of work. We are thinking of relocating if that would help.
Where in the lower 48 is the best place to live with MD? Right now the doctors are just medicating him with Zoloft and Zanex. I think they are clueless.
Thanks!
Cheryl
Hi Cheryl,
I don't really know of any state that would be better or worse for meniere's.
You might want to consider going to another doctor for a second opinion. thats what I did and it really helped.
Stay in touch
David
My Menieres has been in remission for nearly 20 years. The extremely high pollen and mold counts, coincidental with a high pressure system, conspired with who-knows-what else and--Bingo!--up popped the vertigo and loss of balance again. Before going into remission, I underwent surgery to have an endolymphatic shunt put into my left ear,as it was totally out of control and nothing stopped the constant severe vertigo. Thankfully, while I do have bilateral Menieres, my right ear has never given me as much trouble. My hearing in both ears is pitiful, but digital hearing aids do help, and they somewhat mask the tinnitus. However, my hearing continues to decline, and I just try not to think about the possibility that I may one day lose that sense. Meanwhile, I'm hoping my VA doc will cooperate in getting me to a physician who understands Menieres and is current on the available effective treatments. I did find a website out of Germany, and I'm considering doing some online consulting with them, in spite of the expense.
Hi Sandra,
to get a doctor who understands meniere's does seem to be the key. I am glad that the hearing aids help, especially with the tinnitus. I hadn't heard of that I might use it for a future post.
stay in touch
David
David,
Katey mentions that she is in Stage 3 of Meniere's. Perhaps you could write a post about the formal Stages? I think it would be helpful as many people seem to worry that it will always be random, or that things will just get worse.
As you and I both know, things can improve, and I think when Meniere's is described as progressive it maybe applies to the impairment of hearing and balance functions rather than the vertigo and nausea getting worse (in my experience those have got a lot better).
I found this Australian Government page useful:
http://www.healthinsite.gov.au/expert/Meniere_s_Disease
Thanks Jeff!
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