Understanding Mal de Debarquement Syndrome
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- เผยแพร่เมื่อ 28 มิ.ย. 2024
- Mal de Debarquement syndrome (MdDS) gives people a constant sense of rocking, as if you are always on a boat. Learn more about MdDS anda what treatments are available. Dr. Michael Drzewiecki of The Neurologic Wellness Institute discusses MdDS and what you can do about it.
neurologicwellnessinstitute.com/
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Hi. Thank you for posting this. I do want to add this though: one thing that was wrong in the video was the statement about patients moving themselves in the direction of the sway. I have MdDS and I can say that the movement is actually involuntary (there is no conscious control of the movement; it is automatic). It is likely due to the brain oscillations being carried over into motor movement due to the fact the brain thinks (and feels) it is moving in those directions. MdDS can also be both motion-triggered and non-motion triggered. I am triggered by both motion and non-motion factors such as upper respiratory infection and stress. The reason it’s thought that being in a car alleviates the MdDS is because there is a temporary override of the projected phantom motion the brain feels when still. Being in a moving vehicle tells the brain exactly what speed and direction it is going in. MdDS can also be bobbing and not just rocking/swaying. Furthermore, MdDS is different from plain motion sickness. I had motion sickness even before MdDS. MdDS is distinct gravitational pulls and movement; it feels JUST like being on a boat or something else that moves. Your body and surroundings feel like they are moving distinctly. People with MdDS can have motion sickness, usually due to the fact we depend on our vision the most for where we are in space because our brain has gone wacky, but it is different. Motion sickness for most is a general feeling of discomfort and disorientation, which isn’t always easy to describe.
Anyway, good video! Thank you guys for trying to learn about MdDS and help patients. I would love for more case studies to be published!
Additionally, here are some newer papers that may interest you: www.ncbi.nlm.nih.gov/pmc/articles/pmid/33244308/pdf
www.frontiersin.org/articles/564919
I experience the rocking motion, the bobbing motion and the walking on a trampoline, and I can deal with that..but I also experience intense vibrations in the parts of my body that touch the floor or touch something that touches the floor...example: my feet on the floor, it feels like the floor is vibrating..I pick my feet up, I don't feel the vibrations in my feet. If I do this while sitting on the sofa, I won't feel the vibes in my feet but I will feel them in my buttocks. When I ride in a car it all goes away. Also I often hear a roaring sound, similar to an engine idling...this has gone on for over a year. MDDS is the closest match but I've yet to find anyone who mentions vibrations. Do you ever feel vibrations instead the other motions? On some days when I experience vibrations (which is most days), when I get in the bathtub full of water it feels like I'm in a rocking boat. AND I never get nauseous. Also, I often feel off balance when I walk..and sometimes I feel like gravity isn't holding me down and it feels like I'm going to the left or right instead of staying the course. None of my doctors can tell me why/what. They say it's tinnitus; one says the vibrations have to be from an external source b/c I only feel them when I'm touching the floor/ground. It's driving me crazy and I'm desperate to find out the cause.
@@dinahsoar6982 I only experience swimmy head and gravity pull wobbly when I bath and brush my teeth or shave in the sink. I'll most likely be booking an appointment with this Doctor.
@@edwingarcia9626 Hope you get a diagnosis and treatment that fixes your issue. You might have an ear infection or impacted wax. So many things can cause the symptoms you are having.. The ENT that treated me did get rid of the dizziness I experienced when I turned my head from side to side while reclining. That was due to fluid trapped behind my left ear drum and my Eustachian tube being swollen and preventing it from draining. That ear had been impacted w/ wax. My primary care doctor removed it. But the dizziness remained. I'd wake up every morning with that side stopped up. My primary care doctor referred me to an ENT.....He did a myringotomy, which is simply poking a hole in the ear drum which allowed the fluid to drain. It is the same thing they do to children who need ear tubes, minus the tubes. The hole in the ear drum heals up in a few weeks. The dizziness has not returned. That issue is apparently separate from my other symptoms.
@@dinahsoar6982 I'm glad it went away for you. I actually went to the ent he looked inside my ears and basically said he does not see anything that's pretty much all he did. I don't get dizzy at all but I feel like I am a little off on gravity. After a 12 hour flight it's been 3 weeks
I saw Dr. Mike for MsDS. I constantly felt like I I was walking on a rocking boat. It was awful. I am happy to say that I am symptom free. His treatment was life changing for me. I can not recommend NWI enough. I am forever grateful!!
Paid statement above
my second episode has been going for 3 years....it has become much better after taking anti migraine medication, even after I stopped however it was retriggered with my latest menstrual period.
Do you see patients in the Boca Raton location? I have MDDS and interested in coming for treatment.
I suffer from mal de debarquement syndrome since 2018 after a sailing boat cruise of 7 days and a subsequent flight to come back home. Symptoms have never subsided since then. My life has changed forever since this illness. Some periods the symptoms are bereable and at a baseline where I can function. Some periods the symptoms are unbereable.
This gives me a little hope which is something I really need right now. I've had MdDS for nearly 2 yrs now and have gotten to the point of considering suicide because I can't live like this anymore. Most doctors I've spoken with haven't even heard of it before - no help there. I'm going to look into this further. Thank you for posting this video.
I'll be going in October to this Doctor for mdds
I have been living with MdDS (it’s symptoms) for about 4 months now. And I’ve been in and out of hospitals thinking the worst, assuming it was vertigo but doctors made me feel as if I was crazy or not taking the meds for dizziness. I just want to say you can fight this, I hope you find help. This syndrome really pulls at not only your well-being but your sanity. MdDS or not, and I’ve been there in terms of the suicide and wanting to give up, but your place on earth is still very essential. Please keep your head up. Find help and ways to cope. I hope my small encouragement can help you a little.💜
@@nnyannor02 for some reason I do not hear many people going for this OKN Treatment and I will be going in October. It's worth a try it might be a great decision you can make. But as far as my situation I can play basketball, run up 2 stairs of flights without holding the rail. I don't feel symptoms when laying, sitting, or standing still. But when I brush my teeth and shave I feel wobbly like if I was in the airplane bathroom. Also when I walk in in house or small spaces my legs feel like gravity pulling swaying and my neck feels heavy. But I don't experience dizzynezzz or anything. I still consider I have a mild case and wanna go up to get treated. I really hope it works. It's the only treatment out there that is suppose to work.
@@edwingarcia9626 Thank you so much for telling me. I want to get better for real and as far as my symptoms they are the worst when I am trying to sleep. I feel a gravititational pull when I am laying down. I really like to dance and what not so even though my symptoms aren't as bad when I dance, they do persist. I have it bad when I am sitting in the back seat of a car and it is not too bad when I am driving or in the passenger seat. But it is the worst when I am trying to stay still or go to sleep. I have the WORST head pressure as well. Headaches do not go. I do not know where to find this treatment and I do not know how much it costs. Is there a way to contact or reach this guy or find out more information?
@@nnyannor02 yes definitely can you contact me so I can explain in detail.
Is there maybe more news about whiplash and mal de debarquement? And is there more news about MDDs and musclespasms in the neck or veinspasms in the neck and musculus Trapezius area?
I've been plagued by MdDS for over 10 years. I've come across various theories regarding causes. The most cogent for me follows: The inner ear vestibular system functions normally. The cerebellum functions normally. However, connections between between the two systems are anomalous.
I believe there's a treatment being developed for MDDS, and it has something to deal with optokinetic intervention via a VR app.
Dr. Dai's protocol is the most researched therapy used. We discuss this with all patients who have MDDS. Some patients choose to try the Dai protocol and if it doesnt work they see us. Some choose to see us first and if it doesnt work try Dais protocol. Our clinic performs a variation of their technique using a number of modalities such as OPK stimulation (sometimes its fullfield virtual reality stimulaiton, however this is very difficult to copy for home therapies). We also perform a number a sensorimotor treatments to attempt to help MDDS. Each patient with MDDS may respond differently to treatment. We have found we have been able to help a larger percentage of patients who suffer from MDDS. However, there is a subgroup of patients with MDDS who have symptoms very resistant to any therapy and unfortunately MDDS can be extremely debilitating for some people.
@@TheNeurologicWellnessInstitute Thanks for this. If needed, I'm happy to help or participate in a study or interview. I just had strong MDDS symptoms last late January to February 2022 for 6 weeks but for some unknown action or activity I did, I no longer experience rocking, bobbing, or swaying.
My ent dr suggested to ride a bike and drink 3 20 oz Gatorade that's a lot of Gatorade. I'm not sure I should drink that much . What do you think ?
MdDS is a living nightmare. Going on 4 years now. I went to Mont Sinai and Gyrosti m. No relief at all.
This doctor here scammed me he doesn't understand mdds. He made me stand on top of a vibrator pad that was vibrating the entire time and he pulled out a small stripe towel and flashed it in front of my face like training a bull. And he even does useless body maneuvers for mdds. He admitted that he has no idea about the entire Dr Dai protocol other than "stripes going the opposite way." He will turn on the TV with classic stripes and make you look at it without identifying anything and without measuring your rocking. He isn't the one to test your balance scores either it's his assistance. He is only doing this video to try to make money the treatment is not $4600 dollars.
i was diagnosed with MdDs yesterday by my neurologist. a lot of stuff to learn.. i describe my balance like Jack Sparrow. I was prescribed with supplements and hiking. NO treadmill or hiking. check ur neurologist
Dr. Dai's protocol is the most researched therapy used. We discuss this with all patients who have MDDS. Some patients choose to try the Dai protocol and if it doesnt work they see us. Some choose to see us first and if it doesnt work try Dais protocol. Our clinic performs a variation of their technique using a number of modalities such as OPK stimulation (sometimes its fullfield virtual reality stimulaiton, however this is very difficult to copy for home therapies). We also perform a number a sensorimotor treatments to attempt to help MDDS. Each patient with MDDS may respond differently to treatment. We have found we have been able to help a larger percentage of patients who suffer from MDDS. However, there is a subgroup of patients with MDDS who have symptoms very resistant to any therapy and unfortunately MDDS can be extremely debilitating for some people.
@@TheNeurologicWellnessInstitute this is the biggest lie ever. Mike will never tell anyone to go do the Dr Dai protocol if they don't improve with him he will just tell you to keep coming back for more treatments he will never be honest. I have seen Mike and he did NOT use virtual reality on me. He didn't even measure the frequency of my rocking. All he did was turn on the TV with classic stripes and did useless body maneuvers. And he made me look at a small stripe towel like if he was training a bull. And sitting in the gyrostim and I rocked back and forth. He assured me home treatment would help which consisted of standing on a vibrator pad looking at stripes on a phone which is known to be dangerous for mdds patients as our brains could get used to the motion and prolong mdds.. Full field stimulation was not done to me and I paid $4600 dollars last year total scam. Mike doesn't do anything that is related to peripheral vision stimulation. He needs to stop scamming people there's not even one video of a mdds testimony from here. Trust me I know it all. If he isn't scamming people then he simply never seen anyone with mdds and thinks that his patients have mdds due to similarities in symptoms. Habituation of the velocity storage may not get better without peripheral vision stimulation and physical therapy is useless for mdds. He even told me it's okay to go on a cruise after your mdds goes away which is very dangerous to do so. He even told me he has no idea what the Dai protocol fully involves. The Dai protocol involves so many calculations it's like a science project. He has no idea and has admitted to not knowing the full details. My symptoms eventually went away on its own but not because of him because I didn't even do the home treatment.
Did you get better?
He deleted my comment u is a scammer and George is too both have no idea how to treat mdds I've heard this from different woman. I went there and he is clueless has no idea how to treat mdds doesn't even understand the Dai protocol these people should stick to concussions and general dizzyness.