Things people need to know about people suffering from MAV/ MdDS/ chronic dizziness.

In case you missed these Words of Wisdom on our Facebook page, long-time friend, Abby, shares some great insight in this post. Please read, share, and get those thumbs-up!

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WORDS OF WISDOM FOR FAMILY AND FRIENDS

Things people need to know about those suffering from MdDS/MAV/chronic dizziness. By Abby Lane Pankey

1.) We aren’t ignoring or not listening to you, it’s just we are more worried about falling over than what you have to say.
2.) Trust me I am just as sick of being dizzy as you are of me complaining about being dizzy.
3.) Me putting on makeup and brushing my hair is the equivalent of you running a marathon.
4.) You telling me you have had vertigo before, and you know how it feels, could possibly get you punched in the throat.
5.) Your boat does not impress me, I’ve been living on one mentally for a while now.
6.) The chances of me running out of the grocery store are extremely high.
7.) If your house has 10 different patterns and is painted a bright color, we cant be friends.
8.) If you keep talking after I tell you I have head pressure, we can’t be friends.
9.) Falling off the toilet is not that bad.
10.) Panic attacks are a way of life.
11.) I know more about my illness than most doctors.
12.) People who work with this should get paid double what they make.
13.) If I ever do get better the first people I am thanking are those online, that have never doubted my symptoms, who were always there, whom I love.
#truth #MdDS #maldedebarquement #MAV #rarediseases #patientadvocates
@mddsfoundation.org

Things people need to know about people suffering from MAV/ MdDS/ chronic dizziness. was last modified: July 15th, 2017 by MdDS Foundation

3 comments

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  1. After a dozen or fifteen years of living (if it can be called that) with this malady, and getting so little help from the medical community, I found chiropractics. Long story short, apparently an old injury to my C-spine has been causing the MdDS! After many sessions with a chiropractor I am at last finding some relief from the torment! Perhaps you too can be helped- what do you have to lose?

    1. Jean

      Hi catluvrmh…Your story sounds just like me.
      I too have been suffering from dizzy disorder which I think sounds more like Mal debarquement syndrome for over 15 years…and I had a injury to my neck before this started and didn’t think too much of it.
      But then my neck started hurting more and more as the years went by and now I wear a soft cervical collar to keep my head steady which helps with my dizziness. I’ve had many MRIs of my cervical spine and the doctors don’t really see anything in the MRIs that could be causing the dizziness. They say that if I had disorder in the cervical spinal cord it would affect my arms & my hands and not go up into the head and brain area. But I don’t believe that, because the swimming feeling and the off balance and the rocking that I have in my head feels like there is a lack of circulation of blood flow or oxygen to my brain coming from my neck area. I have never seen a chiropractor for this and I’m almost afraid to do so because you hear so many bad stories about chiropractors adjusting your spine and doing more damage.
      What type of chiropractor did you see and why did he feel that your C spine was causing your dizziness? I would be interested in getting more information on this and anybody that has gone through this and has found relief would be very helpful to me. Thank you so much and I hope that you continue to get relief and feel better because I know suffering from this for so long like me is the most miserable existence possible! Thanks!
      Jean

  2. Judith Loree

    Ihave had MdDs FOR 31/2 years now and I so enjoyed reading about how someone else suffering with this horirible “rare” disease as they call it felt about some of those issues.Thank you for sharing those problems we all share & deal with everyday & we just keep going on our wabbly way telling those around how bad it is & they just dont have a clue what it is like living in a world of MdDS. It is hard just getting dressed and doing simple things become so hard cause yes our head feels like its going to blow up and we cant focus and get blamed for not listening or some other inconsiderate response! & the nausea gets so bad from the dizziness we can’t even get out of bed. I am glad to hear from more sufferers of this “wonderful” debilitating condition. I think it will help all of us if we join together to make the world more aware of this condition & how hard life each day dealing with all its wonderful problems.Thank you again for sharing & let us all unite and beat this condition!-Judy:)

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