Update #12 (10/6/2014)
I first wrote this Blog Post back in 2011 to chart my journey towards a cure. I've always been sure I could beat it, so I wanted to document every step.
Unfortunately I'm still dealing with it, but some kind person emailed me last week with brand new info about a possible cure.
I wanted to share it here, as well. Here's the link:
http://www.mountsinai.org/about-us/newsroom/press-releases/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds
Below, is an excerpt from the article:
"The new treatment re-adapts the VOR by moving the visual surroundings as
the head is slowly rolled from side to side at the same frequency as
the subject’s symptomatic rocking, swaying or bobbing. In the study,
the head roll caused vertical eye movements (nystagmus), and subjects
tended to turn to one side when marching in place.
Subjects were rocked or swayed at about one cycle per five seconds.
Generally, three to five treatments a day for one week were sufficient
to produce a cure, and the movements and associated symptoms
disappeared."
If you try this and have success, please come back and let me know or email me at:
houseofwhimsy@juno.com
Best of luck!
Update #11 (2/25/2013)
Since I updated last, my daughter had baby girl twins in December. Life has been very busy ever since!!! I'm still living with the MdDS. At this point I'm just hoping it will resolve itself in the 3-5 years (that I've read about), since I've tried everything else. This will be my last update until I am truly symptom free.
Again, please email me if you happen to find a cure yourself:
houseofwhimsy@juno.com
Good luck,
ML
Update #10 (11/9/2012)
For those of you who follow my blog here, you will see that I got married at the beginning of September...thus my long delay in getting back to updating this.
I did get the second round of hormone pellets in my hip in August, but the MdDS is still hanging on. Ive passed my year mark of living with this now, so at least I have learned patience. I'm just grateful I can still function even though it's very agitating to the brain.
My next set of pellets are going in next month. I'll be back. In the meantime please email me with any successes you may have experienced:
houseofwhimsy@juno.com
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Update #9 (7/26/2012) Well after 6 visits to the Chinese acupuncturist, no change, I'm sorry to report. This thing is just as stubborn as can be. But I'm not giving up hope. I think next week I'll visit my old Chiropractor who practices an unconventional type of chiropractic method. He's helped me get over some big challenges in the past. Also, I'll have another round of bio-identical hormone pellets implanted at the end of August. Maybe both together will do the trick???
If you've visited my blog here, and later go on to find success, please come back and share it with me: houseofwhimsy@juno.com : )
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Update #8 (7/12/2012) So sorry for the delay on this update. Life has gotten away from me this Summer due to lots of family things going on.
So the hormone treatment is going very well. They took my blood work again and my levels are WAY improved. I generally feel better all the way around. They will repeat the blood work again in the middle of August and insert the pellets again at the end of that month.
However, my MdDS is still hanging on. But now that my hormones are leveling out, I've been referred to an amazing Chinese acupuncturist that I will start seeing later this week. I'm hoping that this time (with someone who has an excellent reputation) and my levels good, that I will have success. The others I read about, that found a cure through acupuncture, said it took about 5 visits. I'll be back...........
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Update #7 (6-3-2012) Just added the progesterone (capsule form) on board two days ago. Progesterone will be taken day 1-12 of each month for awhile. So far, I feel like the symptoms of MdDS are diminishing.
What happens next: I go in for another blood test, the middle of June to see where my levels are at. Then my next appointment at Sotto Pelle is at the end of the month and they will tell me if they're on the right track as far as dosages go. I feel very hopeful.
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Update #6 (5-17-2012) I decided to go with BIHT (see update below). The treatment I went with is very cutting edge. After taking a blood test and analyzing my hormone results (which had really bottomed out, by the way). They put together a custom made program together for me. BUT...the unusual thing about this program is that they insert natural hormone pellets under the skin (on the hip) to be better absorbed into the bloodstream.
You can read all about it here:
http://www.sottopellelife.com/index-2.html
There are locations all over the United States. I'll be back with results as they come in.
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Update #5 (5-7-2012): The AcetaZolamide was not the answer, unfortunately. It made no difference and actually just gave me headaches.
Next, I'll either try the TMS (see update #3) or BIHT. I found the following on the Internet recently:
Hi, I had this
illness for 21 months and was 100% cured with Bio-Identical Hormone Therapy.
After 21 months of getting shoulder shrugs from a lot of people in the medical
world, I had always suspected there is a hormone connection. My Doctor gave me
a complete Blood Hormone Panel and found that my Hormones hit the floor and we
believe that this hormone imbalance triggered off a Migraine Varient, I had a
silent migraine (no pain).
From Dr.:
Treatment: Upon our first appointment together
on January 19, 2011
and hearing her list of symptoms also noted on the MdDS brochure she presented
to me, I suspected that her testosterone was low and she was not hormonally
intact.
Patient became symptom-free a few weeks after dosages
were changed. Patient did not disclose this information to the doctor for 2
weeks because she wanted to make sure she was in full remission before
reporting the results.
This represents the first time that a patient with
Mal de Debarquement Syndrome has been
successfully treated through hormone replacement therapy, and that it points to
hormonal migraine as a plausible etiology or exacerbating factor.
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Update #4 (4-10-2012): Well, after going for acupuncture 3 x a week for a month, no improvement. Very disappointing. So my GP Dr. sent me to the Neurologist.
The two of us talked for quite a while and he did some minor testing (mostly cognitive) to make sure nothing else was going on with the brain, unrelated to MdDS.
He said he was going to put me on a medication that most doctors would not think to try, unless they were a Neurologist.
He put me on an anti seizure/migraine medication, AcetaZOLAMIDE (125 MG), once a day for the first 10 days. He said to also keep the Valium on board for the first three days. Then, after the 10 days, he said if I felt like the AcetaZOLAMIDE was helping, I'm suppose to double the dosage to 125 MG (twice a day) until the symptoms are gone.
HERE'S HOPING!!!!! I'll keep you posted.
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Update #3 (3-26-2012) : Well, a little discouraged that I'm not seeing the results I had hoped for from acupuncture yet. I've decided to give it one more week, then move onto something else.
You may be interested in reading the following story of how "TMS" cured one woman of MdDS.
http://abclocal.go.com/kabc/story?section=news/health&id=8389660 (There's a video to watch, included)
Dr. OZ recently had a segment on TMS treatment (which is usually only used for depression). I might look into it.
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Update #2 (3-12-2012) : Okay, I'm going to have to swallow some pride here. But I'm willing, if it will help anyone else out there. See these photos (below) of my home?
Well, I decided to put up this caution tape (the only thing I had enough of to go around the whole downstairs)...hoping it will continue to help my brain to see that the horizon is no longer moving. It's all at exactly eye level. I've also kept up my 2-4 mile walks for the same reason.
So...I've had a few acupuncture sessions now. The Korean Dr. I'm seeing said it could take about 2-3 weeks.
Now for the next pride-swallowing...When I googled 'Cure for MdDS', a few people said that going on Valium for a short while, really helped the brain slow way down and helped the brain have a chance to "re-set". So I printed out those reports, took them into my GP Dr. and he put me on 2mg 3X a day. Talk about RELIEF. What it did was stop the "boat" from swaying, rocking and bobbing in fast motion, down to slow motion. I almost felt human again. I was so grateful for the relief. But I have to laugh when I tell my friends that I feel like one of those 1950s housewives...when every Dr. put every woman on Valium for every complaint. Oh well, whatever works.
I'll report again as soon as I have something new to share.
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First Update (2-27-2012) : I went in for acupuncture this afternoon. The "jury's still out". I have another appointment later this week. I'll keep coming back with updates.
WARNING: A boring Post, below. In a couple days, however, I will Post about a very cute quilt top I've almost completed. : )
I've been very hesitant to Post about this since returning from my Cruise last October. But I decided to, so that anyone suffering from this malady might find it while doing an 'Internet Search' and find help here.
*I haven't "cured" it
yet, but am working on it! I will continue to update this Post with each and every success I have in helping to reduce the symptoms and ultimately resolve it, permanently!
Back to the story:
I patiently waited the two weeks, after the cruise, for the "boat to stop rocking". However, it never did and still hasn't to this day. It's as if my brain shrunk two sizes and is now suspended from a sting that gives the sensation of swaying, rocking and bobbing
every waking moment of every single day.
Below, are a few links that give the definition of MdDS:
http://en.wikipedia.org/wiki/Mal_de_debarquement
living-with-mal-de-debarquement-sydrome
http://www.mddsfoundation.org/professionals/
Anyway, when the continual-motion-sensation never went away, I saw my PCP. He gave me a prescription for steroids in case it was a stubborn inner ear infection. He also gave me a referral for an ENT (Ear, Nose and Throat specialist) and another one for Physical Therapy. The ENT knew immediately that it was MdDS after visiting with me. He knew all the symptoms and said there's a section for the Syndrome at each ENT Convention he attends. He told me that sometimes it lasts months, years and ...some never get over it, EVER! [Ummm, I will NOT be one of those!] He said, "Go ahead and try the Physical Therapy, though I don't think it will do any good." : ( Not very hopeful, but I sure wasn't going to sit home and try
nothing!!!
Some good advice he gave me:
1) "Stay busy."
2) "Don't spend a lot of time on those Internet Forums because they mostly consist of people who never get over it."
What I've done so far:
-My physical therapy exercises with the therapist
and at home. They consist of:
-Exercises you do with the eyes (such as marching in place while starring at an X and then moving the head side to side, then up and down).
-Walking down the hall while turning your head side to side, to find the (X) posted (several of them) at eye level on different sides of the hall.
-Holding a magic marker... and while standing on one foot, move the marker diagonally in front of you (down by one side, then up towards the ceiling to the other side) while you stay focused on the black cap of the marker.
There are several exercises similar to the ones above. I've recently added something I feel is helping even more. I take long walks to "prove to the brain that the horizon is no longer moving". Because the brain over-compensated for 7 straight days on the cruise, it has refused to "re-set" since returning.
I think the fatal mistake I made was to
not take any Dramamine. I never get sea-sick, car-sick, and I love all carnival rides. So I knew I wouldn't need it. However, after doing some research I see that it would have helped the brain to stay a little "fuzzy", which might have helped with this silly situation. We had a couple of pretty rough days on the waters and I also read (after the fact) that at night the boat picks up speed to make better time, which makes for rougher sailing. Thus, it's a good idea to especially take Dramamine at night before sleeping. Good to know, but a little too late.
Well, I'll wrap this up for now. Staying on the computer for long periods of time makes the swaying and bobbing worse. Thus, less blogging time these past few months. No worries though...I WILL be triumphant! The next thing I'm considering is acupuncture, as I read that some have had success within a few treatments???
If you (or anyone you know) has overcome this, please leave a message here. I would love to exchange ideas. And as I said, I will keep coming back to update this Post for those who are also searching the Internet for answers. I would also love for you to join me, my family and friends who are praying for me, regarding this. I love the blogging world. : )
Mary Lou
P.S. I must mention...I'm extremely grateful that I can still function in my day to day activities. It's not like a true form of vertigo where the room is spinning (where the person has to sit in a dark room with their back against a corner wall). I still go about my business, but it just leaves my brain feeling agitated and fatigued. The Doctor's advice was very good... It's important to "stay busy".
Have you seen how others will take these little guys along with them and pose him in front of all their destinations? Too fun!
from Google Images
from Google Images
from Google Images
from Google Images
from Google Images (above)
This got me remembering my promise to show you all the places I took "Sabastian" after I purchased him in Canada during our Cruise last Fall. So, here you go........
Peggy's Cove, below.
Below: next to Angel Moroni at the Halifax Nova Scotia LDS Temple. I REALLY should have photo-shopped that pipe out of there!!!!!
He even came to dinner with us one night while dining on the Ship.
Below: waiting patiently on top of the luggage, while waiting to disembark. 
We had a few hours to kill in New York, before flying home that afternoon. Below, Sabastian is proudly posing in front of the Grand Central Station clock. 
And keeping company with "Captain Jack Sparrow" during a Photo Op. 
And of course, he rode "First Class" on the flight home. Ha!
Home safe and sound (above) in the guest bathroom. He looks pleased.
Happy Travels!!
