cmbeagle's Blog

Mal de Debarquement Syndrome

Thank you fir doing the segment on MdDS. One suggestion is that there is mucg more to our story. I have been suffering for almost 6 years.  I use a cane to assist with walking.  I am unable to stand for any length of time.  But most dissruptive if all is that i physically rock unless I am in a chair that gives me sone type of passive motion.  More time and a panel of "rockers" would be more helpful to bring more perspective to this disorder.  Most of us have a difficult time obaining disability because no one believes we have an illness.  please consider another show to better nring understanding about this evil disoeder.  Thank you.

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Ariannedaume

I was a bit disappointed with the episode. First off it should have covered more information.  Everyone experiences different symptoms with this and she only had the rocking/swaying part.   You left out the major migraines that can be associated with it. I have been dealing with this since Feb 28th, 2010. Since then I have been hospitalized many times for migraines. I see a specialist in Chicago(Dr Hain) who has me on klonopin. I go to Ann Arbor (MHNI) for my migraines. They have hospitalized me twice for 2 weeks each time trying to control them with blocks and meds. People don't realize how bad the migraines can be. I can't take triptans or any Ergots due to meds inducing V Tach and a NESTMI(at age 34). I still rock and spin especially when I am tired or stressed. I have two small kids so dealing with this is hard. I am very debilitating and the roller coaster of emotions we go through was not really expressed. It didn't go into what we and our families have given up or sacrificed for us.  You could do an entire show on just this episode and what it is and how it effects our bodies, families, friends and life in general. I just recently got in the mail a handicap tag as I have major anxiety of crowds and just a few less steps to get into the grocery store helps. It is sad that at 35 I feel 75 and my kids 8 and 10 really only know a sick mommy.  I know you could only do a small part on this, but a lit more that can be covered. Please keep this all in mind.  Thank you Arianne Daume

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