I am a 42 year old married man with two young children and I've had Meniere's Disease in the left ear since May, 2007. If you have found this site you are likely a fellow sufferer or know someone who is. You are likely concerned, frightened, and maybe even depressed. You are probably also overloaded with information and are feeling the frustration that comes with an unconvincing diagnosis of a vague and amorphous yet frightening disease.
The purpose of this site is not to recommend treatments or to provide an information repository or the latest news about Meniere's Disease. There are already plenty such sources readily available to everyone. Furthermore, Meniere's Disease can vary quite dramatically in severity and duration from person to person. The purpose of this site is to provide one sufferer's account of the disease and a friendly place where others can read and share personal information and hopefully benefit from the experience. Although things like symptoms and treatments will surely be mentioned in the discussions found on this site, there is no attempt to cite "facts", reference articles, or provide lists of hyperlinks. The perspective here is that you don't need more information about Meniere's Disease; rather, you need to connect with others who suffer and whose stories may help you. You also need the opportunity to share your stories, questions, opinions, and complaints.
The title of this forum is "Meniere's So What?". This is not to trivialize the disease or to suggest that recovery is simple or even possible. Many people are dramatically affected by the disease for a long period of time. And if you have it then you know that the notion of "recovery" is more of a continuum than an end-state. For me, Meniere's Disease is pretty awful. At the beginning it's terrifying. Then it's just horrible. After that it becomes more of an obstacle with a healthy "thorn-in-the-side" component. (I hope I'm not being too technical.) But you know what? Eventually, I dare say, it might become tolerable and maybe even just annoying. And if you think about all the other things in life that are just barely tolerable at worst and just annoying at best, well, then, maybe it's really not THAT bad.
I'm trying to be careful here, very careful, because I REALLY don't want to trivialize Meniere's Disease. Six months ago I definitely did not feel the way I do about it now. Six months ago my Meniere's Disease was still in the "horrible" stage. But now it's not. I hate it, and I'd really, really love for it to go away forever. But you know what? It's not stopping me from doing anything I want to do, I'm a happy person, I live a normal and very active life. So, at some point, my fervent wish is for all of us to be able to say "Meniere's? So what!"
Subscribe to:
Post Comments (Atom)
4 comments:
Thanks for all of the info. Not too many people know about this disease and it is quite helpful!
I stumpled upon your website b/c my 35 year old twin sister has been suffering from Meniere's Disease for almost 2 years. As I'm sure it is for your family, this is very hard to watch her suffer from this. Feeling helpless is almost as bad a going through this yourself.
My sister struggles with very bad attacks. She has tried the low sodium diet and has the minette. After many many attacks (& most of them being pretty bad) we thought she was doing better until she has experienced 4 attacks in the last month. Like you did she experineces a lot of anxiety and has recently been forced to quit her job.
I am happy to read that you have been able to live a normal life and I have forwarded your blog to her. Thank you for the info.
Wishing you & your family all the best!!!
I wish you and your sister the best. I think that I am able to function relatively well because of the natural course of the disease rather than anything I've done right or wrong. If your sister would like to communicate directly with me, feel free to share my email address with her (measure13@yahoo.com).
-Steve
Your sister may also want to try speaking to a counselor who specializes in anxiety relief and stress reduction. I took anti-depressants while my Meniere's was at its worst. This is a big step and can only be correctly recommended by a psychiatrist, but it certainly did help me. I no longer take them, by the way, and haven't for about a year. I also recommend meditation and I know that others have benefited from yoga. Meniere's has to peak at some point for your sister, and hopefully "burn out". I am not without symptoms, but I am certainly much much better than when I was having attacks. Does your sister have a good Ear, Nose and Throat doctor? I also took a diuretic (acetazolamide) for over two years, but no longer need that. Good luck!
Post a Comment