Monday, February 13, 2012

*How I Cured My MdDS (Mal de Debarquement Syndrome)

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".

20 comments:

Sewconsult said...

Oh, wow! I had no idea that this could happen, but so glad to know. I would love to take a cruise, but have worried about the constant movement. I remember when I was an avid bike rider that I could feel as if I was still riding, long after I stopped. Good luck with a complete cure.
Beckie in Brentwood, TN

Glenda/MidSouth said...

Oh My! I have heard of it before (did not know the proper name), but did not know it could last that long. I have inner ear problems periodically - just can't imagine what you are dealing with. Hope you can get relief soon.

~ Laura said...

I had no idea this could happen!! I thought at first it was about wishing you were still on the cruise...I got sad when I realized you were truly suffering!!!

I hope that it subsides very quickly!! I miss your posts but now I can understand why it's been so hard!!! Do what you need to do to feel better...we'll be here!!! :)

Amy said...

Hi Marylou,
This must be a real trial for you. I'll keep you in my prayers...hope you are soon on the mend.
Amy

Cherry's Jubilee said...

sooo sorry to hear about this...I had nver heard of it before. I hope you feel better soon..hugs, cherry

Jacqueline said...

Calling all pixies!
We need help!
Please rescue Marylou out of this pit!
Love Jacqueline
(I'll get busy and pray!)

PⒿ @ $ € € ₦$ ₣®0₥... said...

Oh, ML- how awful! I'd never heard of such a, thing! It was a very interesting post with helpful tips. Thanks for sharing with us. I understand how uncomfortable it can be to share personal stuff. Please keep us posted on your progress. I hope it goes away soon!

PⒿ @ $ € € ₦$ ₣®0₥... said...

Oh, ML- how awful! I'd never heard of such a, thing! It was a very interesting post with helpful tips. Thanks for sharing with us. I understand how uncomfortable it can be to share personal stuff. Please keep us posted on your progress. I hope it goes away soon!

Joy said...

Oh my gosh Mary Lou, I'm so sorry you are going through that. I too have never heard of that and I pray I never have to experience it.

I was so sick on my cruise , I wanted to die. I just can't even imagine having it when I got home. (((hugs))) to you I hope you get better soon.

Mimi said...

HI MARYLOU!!
OH NO....I LOVE CRUISING and I always have that for a few days. but I LOVE that swaying feeling....but I guess if it never went away it would not be fun anymore...going on another cruise this Oct........hmmmmmm should I finally take some meds??????Maybe I will try it........Oh honey I am so sorry for this, praying that something helps and stops this ailment......that would be bad......
BIG HUGS,
jamie

marie said...

You've been in my prayers...trusting God to take this problem away from you completely!

Eri said...

Hello, I am so glad I found your blog because I too suffer from this debilitating syndrome... I haven't sought treatment yet, and I've had it for about 4 years already, and I'm only 24... it really sux. I would love nothing more than to feel "normal" again, not that I even remember what "normal" is anymore. If I could just get my cognitive function back to what it used to be, and for the fatigue to go away, I would be fine with the bobbing and rocking, but MdDS just affects so many aspects of your life that it becomes so overwhelming. I'm definitely going to be keeping up with your blog. I sincerely hope that you find a cure! Keep trying!!!

Jason Bagley said...

So what's the update? Did the bio identicals work?

Patti Carlson said...

I am so glad I found your blog though Googling. I finally decided to self diagnose my problem which sounds like mdDS. In March of 2011, we went on a cruise, which I have been on a few and never got affected, but we took a ferry from Cozumel to Playa del Carmen and it was terrible! Everyone was getting sick and I haven't stopped bobbing up and down since. I had an MRI, went to an ENT and had all those exercises done as you described, sent to a Chiropractor and nothing helps. I don't have the spinning, it's the bobbing and rocking. Some days are better than others and it seems like when I have a few drinks on the weekend, it gets worse - and I don't drink that much but I enjoy a few wines with dinner. My husband suggested acupuncture and that's how I found your blog. A little disppointed when I read that acupuncture hasn't solved your problem yet. I'm really getting tired of this feeling and sometimes it gets me depressed. I'm following you and look forward to reading positive results. Good luck and thank you for your blog!

will b said...

0.25 mg clonazepam orally disintegrating tablets 2x day

will b said...

I also was on 1cc of testosterone cyponaite 1x per week which made me feel completely better to the point where I didn't need the clonazepam. I recently came off the testosterone and the symptoms came back about a month later. My doctor said there's a connection with hormones and mdds and he's going to do more research on it. Contact dr David zee (dr Z) of Baltimore Maryland . He is the best in the world for mdds, saved my life that's for sure!

M.Stacey said...

Hello!
I am so sorry that you are suffering with this. I have had it since May 2008 after a car journey.

A friend of mine has cured her MdDS 100% using bio-identical hormones and I am now in the process of starting BHRT. Here is a link to her VEDA story :)

http://vestibular.org/news/09-27-2012/searching-stillness-bioidentical-hormones

Jessica K said...

I came across this blog while researching MDD. You caught my eye when you said "cured". We all want that right? haha! If you dont mind, I want to give you a little history of my "bouts" so to speak. If you have any advice, I would GREATLY appreciate it.

I just underwent a CT of my temporal bone and MRI to see if there was any pituitary tumor (still waiting on results) but CT came back fine. I have seen an ENT and Neurologist(DR. Hain) and they seem to think i have nothing wrong with my inner ear. But after reading this MDD.... i think i might have it. I only find relief when i am moving in a car. Its great! I have literally driven around the block to get relief.

I asked my ENT if i could have MDD and he said no. I get if when i get off a plane...i still feel the turbulence and all! its brutal! By question is does MDD come and go? I could be fine in the morning then in the afternoon it will come on like I am literally on a boat! Then it last for 30 mins then goes away then comes back and so the cycle continues. I am so confused.

Age 14 - started experiencing hot flashes
- went to pediatrician and was told that it was adolescence and that I would grow out of it

Age 17 - started feeling dizzy/off balance (very mild) lasted a few days
- dizziness kept coming back. Saw a neurologist and ENT. CT/MRI was done and all came back normal.

Age 18 - went on Birth control to help control cramps and heavy menstrual cycle.

I have always had episodes of feeling off balance/rocky but have learned to deal with it. Doctors believed there was nothing wrong and that I would grow out of it. The off balance-ness has only gotten worse as I have gotten older.

5 years ago I fainted while on vacation. I went to see my GP and she thought it best to get a tilt table test done. After completion of the test, I was told I had Vaso Vagal Syncope.

Since then, I still have had bouts of vertigo but now along with it, I have nausea/headaches and extremely sore eyes. Symptoms come on suddenly and last anywhere between 3-7 days give or take sometimes longer!. I do have some ringing in my ears and fluttering but not usually.

I even underwent a colonoscopy and endoscopy and found nothing.

I was so tired with the off balance feeling, racing heart and feeling "foggy" that I had to seek another opinion.

Since no western doctors could find anything wrong, I have gone to an alternative doctor who studies eastern medicine. She ran a number of blood tests and found that I had a hormone imbalance, low ferretin and anemia. I was SHOCKED that no western doc could tell me this. She put me on supplements that I needed and was lacking in.

I was put on HCG in May 2012 for 1 month and never felt ANY symptoms during that time. I was in heaven!!! I went on HCG for hormone regulation but I did loose a lot of weight. I havent had my period in 7 months. I discontinued BC pills when i was on HCG. Anyways, she wants me to give the Bio identical hormones a whirl. She said that equilibrium issues can be caused my hormone related issues. I love this woman!! She is a genius, she really is!

Sorry for the novel but I am just so over this...its causing anxiety just thinking is this ever going to go away!? Its also interfering with my life which is not good.

If you have ANY opinions, please share your thoughts and suggestions. THANK YOU IN ADVANCE and I hope to hear from you!!

gloria kost said...

I have been dealing with this for a year now and was told to take a valume before bed and it helped so i quit taking it now its back again i feel like i cant keep taking valume for the rest of my life but i guess if thats what it takes i feel so off balance its not even funny have to hold on to things to help me stand or lean on something the valume didnt help 100% but did help some and i dont think i am supposed to take it during the day anyone have any other suggestions for this v_gloie@hotmail.com thanks

Mike Kelly said...

I went on an 11 day cruise 10-09-13 to 10-20-13. We were on the ship for 2 days before our first port in Colombia. I felt it as soon as I stepped onto land. Having had this one day after spending the night on a cabin cruiser I thought little of it expecting it would go away in a day or so. It has been 15 days since I got off the ship and still have it. I'm trying to be optimistic but I am miserable especially after reading where some people have it for many years.
Some days are better than others but not much. I have to be extremely careful taking a shower because I feel like I am going to fall out and nearly have. Just sitting here typing this now gets me very agitated.

I asked others on the ship if they felt like the land was rocking but none I spoke to said they did. I think they thought I was crazy.

My personal belief is that whatever causes this is also responsible for my fear of heights(I can feel it and it runs in my family) and also the fact that I get dizzy very easily, almost sick, on some rides at the state fair. MdDS makes me feel the same way as those things do.

I stay in a condo in Florida after the cruise and they first put me on the 14th floor. Between the fear of heights and trouble keeping my balance I felt like I was going to fall over the rail before I got to the room. I got moved to the 7th.

This is a terrible disorder and I hope someone finds a cure soon. I am unemployment right now but fearful I may have trouble at work if/when I get called back.

Good luck to you.

Mike Kelly
Florence, AL