Has anyone had landsickness or MdDS post cruise? How long did it last?

[Hikini]

Hi! I suffered from MdDS for almost a year after a cruise about 6 years ago. I thought I was going to feel that way forever. I had been on previous cruises and never been effected. I had multiple tests and nothing was wrong with me, it's just an inner ear thing. I had an EENT tell me there are these little rocks that sit on top of part of your inner ear, if they fall down, that is when the rocking issues start. Mal De Barquement is a syndrome, and to me that means that there are many different reasons why it can be happening to you. I quit taking Ambien (which is the only thing different that I was doing from previous cruises) and went to a chiropractor and it went away. I was very skeptical about taking another cruise, but we love to do it so I gave it one more shot. I still get that "rocking feeling" but I really think that I am just really aware of it--and it is not nearly as bad as it was the first time, and it goes away. I can understand your hestitation to cruise again--it's a very unpleasant feeling. I think if it went away the first time, it would go away again. But you will be looking for it, so you will notice the "sea legs" more because of that. I wish I could say that there is something you can do that prevents it from happening, but I haven't been able to find anything. I guess it comes down to how bad you want to go:)

 

The little rocks (crystals) can become dislodged even without cruising, but a vestibular therapist can get them back into place with one or two treatments, usually. Aside from cruising, my Mom suffered from vertigo a few years ago (she was in her mid 70's at that time) and she went to a vestibular therapist and he did his "magic" and my Mom has never had a case of vertigo since. (A vestibular therapist is a physical therapist who has had further training for balance issues.) And no, I'm not a PT, but I believe in what it did for my Mom.

 

As far as cruising, I always feel a gentle rocking for about a week after a cruise. I don't find it irritating because it makes me think of the recent cruise. But I wouldn't like it if it kept going on and on and on.

 

Good luck!

[gizfish]

I have had Mdds since 1998. I have cruised many, many times since. Luckily I don't have to work and I love to cruise, so the risk of an exacerbation/relapse has been worth it to me. I have stayed in mid ship cabins, lower, higher, aft, forward etc... and have found no pattern as to whether I will rock for a long time once I get home. I have been in calm seas and bad seas, on ships where you don't even feel the motion (like Oasis) and on smaller ships. I have flown home or driven a short distance home from the cruise, and still, no pattern as to if that will be the one that gets me rocking again. I have also had spontaneous relapses/exacerbations that have been far worse and lasted longer than rocking after subsequent cruises. To be clear, my base line of symptoms is VERY manageable for me and since I love cruising, the risk is worth it. The longest I have had worsening of my baseline symptoms after a cruise has been for 2 weeks or so. I think I may be able to have that mild reaction due to a few things. 1. like I said my baseline is pretty good to begin with. 2. I take Meclazine 25 mg at least once a day while cruising and generally when at sea take it about once every 18 hours. (You can take it twice a day if the side effects are not a problem and it will sedate your inner ear that much more.) 3. Once I am back on land, I challenge my vestibular system by doing the things that make me rock more up to the point of the just beginning to get nauseous. I get back into using the elliptical and treadmill. I go to the mall, grocery store, etc., all those things that are visually stimulating. I spend time on the computer (the hand eye thing is usually a trigger.)

 

All that being said, I personally would not risk such a long cruise. I personally would be concerned that 14 days would be too long and my body would get so used to the sea thing that it would take long and be difficult to get back to my baseline. To be honest, I have other issues preventing me from a long cruise (could never leave my fur kid that long) and who knows, if the right situation came up, maybe I would risk it.

 

Good luck deciding.

[DJHoneymooners]

I just was diagnosed with MdDs after a 7-day uneventful and fabulous Holland America cruise to Alaska with two very short flights from San Jose, California to Seattle, Washington, (I've had it now for going on 7 weeks and met with the motion neurologist at Stanford, then had a balance assessment at Stanford (hooked up to harness, they show patterns, you're standing on a foot plate that can move to determine your balance) and then had a brain MRI and angiogram in my brain/neck to rule out any strokes, tears, etc. I have done my research since week 1, because I knew something was amiss and from what I have read, the sooner you act to resolve the MdDS, the better chance of getting into remission. These papers/studies/treatment are the only ones I show to be somewhat effective. There is a woman on YouTube who talks about and demonstrates the homework (eye focus/motion) you are sent home to do after your treatment at Mt. Sinai.

and

(you can subscribe to her channel) I also saw another YouTube of someone doing something similar, so it seems congruent.

In addition to this article where treatment is available at Mt. Sinai, http://www.mountsinai.org/about-us/newsroom/press-releases/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds I found this article of a place in Chicago that also does it http://www.dizziness-and-balance.com/treatment/rehab/mdd/roll_adaptation.html I reached out to Dr. Dai's office in NY at Mt. Sinai and they sent me an intake form, which I am filling out. As of today, 7/19/2017, the procedure is $2,500 out of pocket, as they said that no insurance will cover it. I did find a billing code for MdDs now -- from https://mddsfoundation.org/about/ (Mal de Débarquement Syndrome does have a billing code found here: 2017 ICD-10-CM Diagnosis Code R42.) however (my balance assessment was out of pocket at Stanford, too...special rate for cash payers $562.00 instead of $2,880. - my high-end Cigna insurance didn't cover it, calling it "experimental". (seriously, when is assessing someone's balance "experimental"??? This is 24/7, whereas a lot of vertigo can be cured.) The procedure to try to treat MdDS is typically under a week, 5-7 treatments a day. Sample treatment (don't try this at home...wait to have a therapist work on you and they can send you home with at home treatment afterward...because you can mess yourself up if you look at these patterns incorrectly.

There is a follow-up paper on people who have been treated, so you can see the results and follow-up after one year: http://journal.frontiersin.org/article/10.3389/fneur.2017.00175/full A segment quoted here: "The treatment group consisted of 120 classic and 21 spontaneous MdDS patients. The initial rate of significant improvement after a week of treatment was 78% in classic and 48% in spontaneous patients. One year later, significant improvement was maintained in 52% of classic and 48% of spontaneous subjects. There was complete remission of symptoms in 27% (32) of classic and 19% (4) of spontaneous patients. Although about half of them did not achieve a 50% improvement, most reported fewer and milder symptoms than before. The success of the treatment was generally inversely correlated with the duration of the MdDS symptoms and with the patients’ ages. Prolonged travel by air or car on the way home most likely contributed to the symptomatic reversion from the initial successful treatment. Our results indicate that early diagnosis and treatment can significantly improve results, and the prevention of symptomatic reversion will increase the long-term benefit in this disabling disorder."

One of the two places won't treat you unless you've had it for three weeks. I am still uncertain if Stanford knows Dr. Dai's protocol...I'm hoping so, because though you can get a remission after the treatment, getting onto a plane for 5 hours can negate it. I haven't had to get a cane yet, but I am bobbing up and down all of the time, even lying in bed... I feel like I am walking on a funhouse floor, am pulled by gravity left, forward and back...all day. I am using entirely different muscles in my legs and feel like some muscles have already atrophied from lack of usual use. I "wall walk" a lot, so that I am near something to hold me up when I am pulled over too far. I have to hold onto the sheets and tuck myself in at my shoulders so that I don't roll off. I had mild tinnitus (ringing in ears) before the cruise and now it's 5 times louder. I also get headaches now (didn't before), had my first migraine, and feel "fullness" in my ears. I cannot tolerate flickering lights now, loud noises, crowds and get confused and have brain fog where I can't find the words to say. I was 55 when I went on the cruise just almost 7 weeks ago and am female...so I present all of the "classic" symptoms. I hope this helps some of you out there... On YouTube, I saw a woman do treatment in a spinning chair where she had a clicker to press at certain stimuli within the apparatus. I met a woman who had this done and it didn't do anything for her. Each patient is unique, so don't stop trying things because one of them may work. I have had to take a valium a couple of times so far and it helps calm my brain so that I can sleep. Lack of sleep and stress can have a lot to do with the severity each day. It has been an indicator for me. I would like nothing more than to do this same cruise with my mother...and reading some of the previous posts may convince me to go again... Also, I flew down to San Diego and back (one hour flights) and it didn't affect me one way or the other...still the same. It was a dream honeymoon to see our beautiful Alaska. If you want to see something really neat, the whales go from Hawaii to Alaska and come through certain areas. There are live webcams going and monitored by OrcaLab at http://explore.org/live-cams/player/orcalab-base I just saw a humpback come out of the water and show his tail!, saw a couple of Orcas, and a bald eagle. Just so beautiful...reminds me of my cruise... :)

Edited July 20, 2017 by DJHoneymooners

[biker@sea]

:evilsmile: 2014 THREAD :halo:

[mugtech]

My suggestion would be to get back on a ship as soon as possible.;)

Great advice no matter the subject.

[NittanyCruise]

I felt a weird sensation like I should be swaying slightly, but never any actually nausea.

[si4444]

I get bad sea legs after just a seven day cruise. It takes me a while to recover on land after but now I use meclizine it helps a lot.

 

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[jillybeanvt24]

Hi there. I know this is an old post but I am hoping for some answers. I just got off an 8 day cruise about a week ago and am experiencing classic MdDS symptoms. Clearly I am pretty freaked out as this is the first time I’ve felt this way, and my second cruise. I’ve been researching online and reading posts and hoping for some success stories from people that have endured these symptoms that have resolved. Most of what I’ve read is if it lasts past a week you’re in it for the long haul. :(. It seems like every day I get up my symptoms get worse which is pretty frightening. Anyone else have any success or similar experience? I’m hoping that you can all tell me that eventually your symptoms resolved and I am freaking out over nothing.

 

 

I just was diagnosed with MdDs after a 7-day uneventful and fabulous Holland America cruise to Alaska with two very short flights from San Jose, California to Seattle, Washington, (I've had it now for going on 7 weeks and met with the motion neurologist at Stanford, then had a balance assessment at Stanford (hooked up to harness, they show patterns, you're standing on a foot plate that can move to determine your balance) and then had a brain MRI and angiogram in my brain/neck to rule out any strokes, tears, etc. I have done my research since week 1, because I knew something was amiss and from what I have read, the sooner you act to resolve the MdDS, the better chance of getting into remission. These papers/studies/treatment are the only ones I show to be somewhat effective. There is a woman on YouTube who talks about and demonstrates the homework (eye focus/motion) you are sent home to do after your treatment at Mt. Sinai.

and

(you can subscribe to her channel) I also saw another YouTube of someone doing something similar, so it seems congruent.

In addition to this article where treatment is available at Mt. Sinai, http://www.mountsinai.org/about-us/newsroom/press-releases/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds I found this article of a place in Chicago that also does it http://www.dizziness-and-balance.com/treatment/rehab/mdd/roll_adaptation.html I reached out to Dr. Dai's office in NY at Mt. Sinai and they sent me an intake form, which I am filling out. As of today, 7/19/2017, the procedure is $2,500 out of pocket, as they said that no insurance will cover it. I did find a billing code for MdDs now -- from https://mddsfoundation.org/about/ (Mal de Débarquement Syndrome does have a billing code found here: 2017 ICD-10-CM Diagnosis Code R42.) however (my balance assessment was out of pocket at Stanford, too...special rate for cash payers $562.00 instead of $2,880. - my high-end Cigna insurance didn't cover it, calling it "experimental". (seriously, when is assessing someone's balance "experimental"??? This is 24/7, whereas a lot of vertigo can be cured.) The procedure to try to treat MdDS is typically under a week, 5-7 treatments a day. Sample treatment (don't try this at home...wait to have a therapist work on you and they can send you home with at home treatment afterward...because you can mess yourself up if you look at these patterns incorrectly.

There is a follow-up paper on people who have been treated, so you can see the results and follow-up after one year: http://journal.frontiersin.org/article/10.3389/fneur.2017.00175/full A segment quoted here: "The treatment group consisted of 120 classic and 21 spontaneous MdDS patients. The initial rate of significant improvement after a week of treatment was 78% in classic and 48% in spontaneous patients. One year later, significant improvement was maintained in 52% of classic and 48% of spontaneous subjects. There was complete remission of symptoms in 27% (32) of classic and 19% (4) of spontaneous patients. Although about half of them did not achieve a 50% improvement, most reported fewer and milder symptoms than before. The success of the treatment was generally inversely correlated with the duration of the MdDS symptoms and with the patients’ ages. Prolonged travel by air or car on the way home most likely contributed to the symptomatic reversion from the initial successful treatment. Our results indicate that early diagnosis and treatment can significantly improve results, and the prevention of symptomatic reversion will increase the long-term benefit in this disabling disorder."

One of the two places won't treat you unless you've had it for three weeks. I am still uncertain if Stanford knows Dr. Dai's protocol...I'm hoping so, because though you can get a remission after the treatment, getting onto a plane for 5 hours can negate it. I haven't had to get a cane yet, but I am bobbing up and down all of the time, even lying in bed... I feel like I am walking on a funhouse floor, am pulled by gravity left, forward and back...all day. I am using entirely different muscles in my legs and feel like some muscles have already atrophied from lack of usual use. I "wall walk" a lot, so that I am near something to hold me up when I am pulled over too far. I have to hold onto the sheets and tuck myself in at my shoulders so that I don't roll off. I had mild tinnitus (ringing in ears) before the cruise and now it's 5 times louder. I also get headaches now (didn't before), had my first migraine, and feel "fullness" in my ears. I cannot tolerate flickering lights now, loud noises, crowds and get confused and have brain fog where I can't find the words to say. I was 55 when I went on the cruise just almost 7 weeks ago and am female...so I present all of the "classic" symptoms. I hope this helps some of you out there... On YouTube, I saw a woman do treatment in a spinning chair where she had a clicker to press at certain stimuli within the apparatus. I met a woman who had this done and it didn't do anything for her. Each patient is unique, so don't stop trying things because one of them may work. I have had to take a valium a couple of times so far and it helps calm my brain so that I can sleep. Lack of sleep and stress can have a lot to do with the severity each day. It has been an indicator for me. I would like nothing more than to do this same cruise with my mother...and reading some of the previous posts may convince me to go again... Also, I flew down to San Diego and back (one hour flights) and it didn't affect me one way or the other...still the same. It was a dream honeymoon to see our beautiful Alaska. If you want to see something really neat, the whales go from Hawaii to Alaska and come through certain areas. There are live webcams going and monitored by OrcaLab at http://explore.org/live-cams/player/orcalab-base I just saw a humpback come out of the water and show his tail!, saw a couple of Orcas, and a bald eagle. Just so beautiful...reminds me of my cruise... :)

[swedish weave]

Hi there. I know this is an old post but I am hoping for some answers. I just got off an 8 day cruise about a week ago and am experiencing classic MdDS symptoms. Clearly I am pretty freaked out as this is the first time I’ve felt this way, and my second cruise. I’ve been researching online and reading posts and hoping for some success stories from people that have endured these symptoms that have resolved. Most of what I’ve read is if it lasts past a week you’re in it for the long haul. :(. It seems like every day I get up my symptoms get worse which is pretty frightening. Anyone else have any success or similar experience? I’m hoping that you can all tell me that eventually your symptoms resolved and I am freaking out over nothing.

 

Check the Internet for the Epley maneuver. It seems some have had success with that.

[ColeThornton]

Hi there. I know this is an old post but I am hoping for some answers. I just got off an 8 day cruise about a week ago and am experiencing classic MdDS symptoms. Clearly I am pretty freaked out as this is the first time I’ve felt this way, and my second cruise. I’ve been researching online and reading posts and hoping for some success stories from people that have endured these symptoms that have resolved. Most of what I’ve read is if it lasts past a week you’re in it for the long haul. :(. It seems like every day I get up my symptoms get worse which is pretty frightening. Anyone else have any success or similar experience? I’m hoping that you can all tell me that eventually your symptoms resolved and I am freaking out over nothing.

 

 

If you are feeling unwell and your symptoms are getting worse I recommend you consult a doctor, not an internet forum. Self-diagnosing is not the best course of action. :confused:

[brookie848]

Hi there. I know this is an old post but I am hoping for some answers. I just got off an 8 day cruise about a week ago and am experiencing classic MdDS symptoms. Clearly I am pretty freaked out as this is the first time I’ve felt this way, and my second cruise. I’ve been researching online and reading posts and hoping for some success stories from people that have endured these symptoms that have resolved. Most of what I’ve read is if it lasts past a week you’re in it for the long haul. :(. It seems like every day I get up my symptoms get worse which is pretty frightening. Anyone else have any success or similar experience? I’m hoping that you can all tell me that eventually your symptoms resolved and I am freaking out over nothing.

 

The friend who cruises with us gets sick after she returns home. On the last cruise, the thing that helped the most was acupuncture. It might be worth a try if nothing else is working for you.

 

Her symptoms usually last for two weeks or so.

[grandmarnnurse]

I am usually plagued with this for a few days after arriving home.

 

 

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[Peachypooh]

The best course of action is to see a doctor if you feel unwell. It might be something completely unrelated to having been on a ship.That said, after my last cruise where there actually was quite a bit of motion and we had a cabin at the very front I had some problems for around a week. I felt like the floor was swaying and it got especially worse if I looked down. I would even without thinking try to adjust my stance like when you are on a ship. Fortuantely right at the 6 day mark more or less it went away.

[Cindyscruising]

I usually have these symptoms for a week or two upon returning home. I find by wearing sea - bands once I am off the ship it helps tremendously

 

 

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