Hey everyone, I went on a cruise about a month ago and ever since then I've been experiencing what I think is called Mal De Debarquement Syndrome. My symptoms have changed over the course of the month. First it was the swaying/rocking motion, dizziness, nausea from the dizziness, eye fatigue and then after about a couple weeks I started feeling a gravitational pull sensation. It constantly feels like my neck, chest, throat is being tugged/pulled forward. Sometimes it feels like gravity is pulling me to the right. My balance is off because of it. It seems to be more apparent while I'm sitting still or laying on my side. Sometimes if I stand still I feel the gravitational pull drag my body to the right. It makes my neck/throat tense and uncomfortable and as a result of that I sometimes feel nauseous. Other times I felt like air was getting into my throat, or feeling like I need to burp but can't. I don't know what is causing this gravitational pull sensation. That's what bugs me the most. Also now my symptoms of rocking/swaying came back again along with it. Some days it's light, other days it's intense. It's never consistent and I can't tell if it's ever getting better to be honest. I'm scared this will stay with me for the rest of my life.
I'd like to add that I went to see a doctor who first prescribed me meclizine. It did not help. Then I went to an ENT who mentioned my symptoms are related to migraine symptoms & Mal De Debarquement Syndrome. So the ENT basically mentioned to go on a migraine diet and to take vitamin B2 + magnesium oxide for at least 6-9 weeks. They said they've seen improvement in patients with it but I really don't know. My PCP mentioned he doesn't think it's related to migraines and doesn't think the vitamins will do anything and that with things like these only time will make it better. I also heard that physical therapy can help with MdDs but it really depends on the patient.
I'm wondering if anyone has an answer because I'm getting so many different answers from people. What is the best solution to get better faster?
Hi Emily,
I see your post was about 7 months ago and was wondering if you have improved. My current experience is similar.. started with swaying and nausea which has 90% resolved over a month but now get gravitational pulls especially when sitting still, working on a computer, etc. Hoping you have some advice. Thanks
Hello,
responding to 2022 post. I have suffered from MdDS for over 2 years. I also get vestibular migraines. After extensive testing with neurologist, Vestibular PT and ENT the diagnosis is confirmed. Happened after a cruise in 2023. Symptoms progressively worse. I cope by walking outdoors as much as possible, Vestibular PT and taking Clonazepam. I am on a few committees with the MdDS Foundation and we have developed a patient registry which we hope will help research on this beast of a disorder. I live in Olympia WA and cannot find a neurologist near here who is willing to manage my MdDS ongoing. I would say the majority of MDs and PTs have never heard of this disorder. It is rare and can be quite debilitating. Check out the MdDS Foundation. mddsfoundation.org I would love to see more information and referrals here in this forum.
