Sunday, April 15, 2012

The invisibility of Meniere’s disease

For ideas about possible posts on this blog or just to continue to learn as much as I can about Meniere’s disease I do a search on Google news on a regular basis. Lots of times there isn’t a lot of new issues about this disorder or stories about it but the other day I found a post on the OregonLive.com site about a man who struggles with not only Meniere’s but also back problems as well as osteoarthritis.

He makes a good point about how most disabilities are easily seen by other people…

When someone sees another person in a wheelchair, motorized cart, using a walker or even with a cast on their leg and using crutches, they know right away that person is disabled. However, not all disabilities are quite so obvious.

I think that most of us who have dealt with Meniere’s over the years can definitely understand what he means. It is unfortunate that some people (a lot of people) can understand what we are going through without seeing a big Meniere’s attack.  What can be particularly bad is when even people close to you have a hard time understanding the full impact on one’s life that Meniere’s brings.

Changing the subject just a bit but last week’s blog post was number 300!! It took 3 years to reach that milestone and I want to thank everybody for supporting “My life and Meniere’s disease”

Feel free to comment and please subscribe to my RSS Feed

Thanks

11 comments:

  1. You are right David. My daughter says unless I'm having a full blown Meniere's attack, I look 'normal'. You can tell if someone is in a wheel chair or with a white cane that they have a disability . . . but if you have Meniere's or are hard of hearing, they are invisible disabilities.

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. This comment has been removed by the author.

    ReplyDelete
  4. Just found your page. I was diagnosed with Menieres a bit over 3 years ago. I can still sometimes go a month or more without a severe attack, other times it's a weekly occurance. Folks that don't have it can't truly understand.

    Until recently even I didn't realize how much the disorder affects me even between attacks. On my last visit to the Doc while getting a steroid injection I spoke with him about how riding motorcycles on the dirt, street, and track was getting more difficult on my good days.

    The Doc explained that a large part of the problem is my "baseline" balance is now poor and the eye movement issue that can be seen during examination even when I feel "fine" is not only a symptom but part of the problem.

    The body is a strange and wonderful thing though. It's greatest ability is the ability to adapt. Now with more information I can work on that adaptation process better.

    One day I hope the issue will be as invisible to me as it is to everyone around me.

    I'll be spending time looking through your site. Thanks for creating a place to read and study.

    ReplyDelete
  5. I was told my my local DARS office that Menieres is a approved disability but I just now need the official diagnosis by a a doctor!

    ReplyDelete
  6. I was diagnosed finally today. I started with Bells Palsy and it went away after 5 days of a high dose of pregnisone. I have question though. Has anyone dealt with loss of coordination in side affected? It's taken me about 3 minutes to type this instead of seconds. Also, handwriting is horrid now. ?? So glad a friend found this for me though!!

    ReplyDelete
  7. I was just diagnosed with this. I was hit with Bells and it went away after 5 days of high dose of steroids. Then the worse vertigo started a day later. I have a question though...has anyone dealt with lose of coordination in affected side? Typing this is a struggle, and my hand writing is getting almost unreadable. Any opinions? Also, I'm getting ready to lose my job because of this. Anything would be helpful!!

    ReplyDelete
    Replies
    1. I have had some loss of coordination, but it is not limited to one side. I think you should talk to your doctor about this.

      Delete
  8. Hi madmadmama,
    coordination has also been a problem for me throughtout the years of meniere's. You should definitely tell your doctor about all this to see what course of action is available to help you out. and remember it is always a good idea to get a second opinion.
    David

    ReplyDelete
  9. Hi I'm 26 years old nd have had tis problem for years but have put up wit it but over the last 3 to 4 years my quailt of life is crap, I went to doc for years nd this disease was never mentioned till yesterday when I went to a different doc, I fell on edge nd off balance all of the time with a pressure on either side of my forehead, does anyone know of any medication to steady me as I'm at my wits end now nd I'm really tired of it

    ReplyDelete
    Replies
    1. Anonymous, is what you are describing a kind of headache, the pressure on either side of your forehead? If so, maybe try a migraine relief medication. There's an over-the-counter supplement my neurologist recommended, called Migrelief. It's natural substances, so it won't help right away, but it is supposed to start helping at 4 to 6 weeks.

      Delete