Mal de Debarquement Syndrome (MdDS) Treatment at Mount Sinai

• Treatment of Mal de Debarquement Syndrome (MdDS) by habituation of Velocity Storage
• MdDS Symptoms
• MdDS Recommendations for MdDS patients
• How to make an appointment
• Preparing for your appointment
• Treatments and testing available
• Treatment of MdDS
• Treatment of motion sickness
• Treatment policy
• Vestibular treatment center personnel
• Publications related to our treatments
• Web Applications

Treatment of Mal de Debarquement Syndrome (MdDS) by habituation of Velocity Storage

Mal de Debarquement Syndrome (MdDS) is an under-recognized but nevertheless common balance disorder, which in most cases occurs after exposure to prolonged passive motion. MdDS is manifested by constant postural rocking/swaying or gravitational pull of the body, and accompanied by high sensitivity to light, noise, or crowds, or cognitive dysfunctions including short term memory impairment. In addition to motion-triggered (MT) cases of MdDS, similar symptoms can occur without a clear trigger, identified as spontaneous MdDS. We recently developed the first effective treatment method for MdDS based on readaptation of the vestibulo-ocular reflex (VOR). Over the past several years, more than 600 patients from around the world have been treated with this method. The hypothesis underlying this treatment is that MdDS is caused by maladaptation of a functional component of the VOR called velocity storage, whose readaptation can be stimulated by exposure to whole-field visual motion coupled with head tilts. Our current success rate immediately after treatment of MT MdDS is 75%. However, some patients report return of symptoms after flights or prolonged car rides following a treatment. Thus, for some patients, the effectiveness of the current MdDS treatment protocol appears to depend on a serious practical limitation of needing to permanently avoid transportation. Building on the previous hypothesis of velocity storage maladaptation, we currently hypothesize that reduction (habituation) of velocity storage can also resolve MdDS symptoms. Velocity storage can be significantly habituated by 4-5 days of treatment with a protocol previously designed in our laboratory to reduce susceptibility to motion sickness. Preliminary data support that velocity storage habituation reduces MdDS symptoms.

In this project, 30 motion triggered MdDS patients with no history of inner ear problems and no severe neurological decoders will be randomly assigned into two groups. Group 1 will be treated with the habituation protocol only, and Group 2 will be treated with the VOR readaptation protocol only. Patients will be followed up for up to 6 months.

Based on the preliminary data, we expect both groups to experience similar initial symptom improvement, but Group 1, undergoing the habituation protocol, to better retain the initial treatment impact. This project will broaden treatment options for MdDS and increase the current understanding of recurrent MdDS.

If you would like to participate in this study, please contact Dr. Sergei Yakushin, PhD by email at sergei.yakushin@mssm.edu.

Recently, our research has focused on motion sickness in MdDS. We are working to raise $10,000 for a small pilot study to determine whether the motion sickness protocol for MdDS patients can improve the motion sensitivity commonly seen in concussion patients. To make your donation, please contact Mr. Thom Harmon at thomas.harmon@mountsinai.org and specify that the donation is for Dr. Yakushin’s concussion research.

MdDS Symptoms

MdDS is comprised of primary as well as secondary, or accompanying symptoms. The uniqueness of MdDS is that the set of symptoms and the strength of each symptom varies from patient to patient. A patient can have only primary, or both primary and secondary symptoms. The particular secondary symptoms and their strengths may also vary.

Primary MdDS symptoms:

A distinct signature of MdDS is persistent:

• rocking (forward-backward)
• swaying (side-to-side)
• bobbing (up-down)

Some patients report these sensations while their posture remains stable. Depending on the strength of these symptoms and the duration of MdDS, these symptoms can be experienced when sitting, standing, or lying down. Sensations during walking vary, but are frequently reported as:

• "trampoline walking", when the ground pushes your feet up in response to every, or some steps
• "sponge walking", when the ground feels soft

A common variation of two types of walking is the sensation that with every step, your feet hit the floor earlier or later than expected. This sensation can be similar or different for your left and right foot.

• “penguin walking”, when a patient feels that their body goes side-to-side with every step, while physically their walking appears normal
• “walking on a people mover at the airport”, when the sensation is that some force is pushing you forward with every, or some steps
• “walking on wavy ground”, when the sensation is that the ground is moving up and down with every step, or there is a sensation of gradually walking up and down hill over several steps “ground motion”, where some patients feel that while they are stable, the ground under their feet is constantly moving forward-backward or side-to-side in an oscillating fashion and they have to move their body to maintain balance

Secondary (accompanying) MdDS symptoms:

Apart from the primary motion feelings, there are a number disturbing symptoms reported. They are cognitive dysfunction, spatial disorientation, wooziness, headache, head pressure, ear pressure, visual intolerance, insomnia, fatigue, queasy, panicking, stress and depression. MdDS symptoms can be aggravated/reversed by visually exposing to busy patterns, crowds, confined spaces, computer or cell phone scrolling. We are recently implementing a protocol that would reduce the visual susceptibility for the prevention of a reversion of symptoms.

Recommendations for MdDS patients

Below are our recommendations for patients who are sensitive to fluorescent light, bright lights, or TV and computer screens.

The majority of MdDS patients are sensitive to bright lights, busy visual environments, and scrolling on a computer or cell phone screens. Our treatment is designed to reduce your physical motion or sensation of motion. Only a small number of patients become less sensitive immediately after treatment. In the majority of our patients, visual sensitivity normalizes several months after the treatment. The duration of this period is varied from several weeks to a year, depending on the strength or sensitivity, the anxiety level, and other factors. To make the recovery after MdDS treatment most effective, you should avoid strong visual stimuli. The folloring recommendations have helped some of our patients in the past:

• Avoid bright sunlight. Wear sunglasses whenever walking outside regardless of weather.
• Avoid the blue portion of the visual spectrum. According to Dr. Stuart Sinoff (private communication), wearing goggles that cut off the blue portion of the visual spectrum improve conditions for patients with ocular migraines. We recommend that to our patients, and some of them have reported substantial improvements. There are two types of glasses on market that patients tried: FL-41 and low blue lights goggles from www.lowbluelights.com. Both reduce the blue light portion of light spectrum by filtering. The “blue” color is defined as being between 450 nm and 495 nm in wavelength. FL-41 goggles only partially reduce blue light, however, and some patients feel better while wearing them. You can find these goggles online. The glasses from www.lowbluelights.com block all wavelengths below 530 nm. Some of our patients reported improvements when wearing them. Some of our patients with increased sensitivity to lights reported no difference from wearing either of these glasses.
  You can avoid blue light on your computer by using program called F.LUX: https://justgetflux.com/.
  KODAK Total Blue Lens could be helpful https://youtu.be/yyZCzWv4KnI.
• Avoid fluorescent lights. Some of our patients are so sensitive, that they are even able to see the flickering of fluorescent lights. You can reduce the brightness of fluorescent lights by wearing sunglasses and baseball cap, to cover your eye from lights coming from above the glasses.
• Avoid the flickering of TV screens and computer monitors. Increase the refresh rate in your computer’s settings. Check online for support for your product. Install screen-dimming software. If nothing works, see if you can get a flicker-free TV and use it as a monitor. For details see: https://en.wikipedia.org/wiki/Flicker-free. Some patients feel better working on monitors with high refresh rate (144 Hz).

How to make an appointment

To make an appointment for MdDS research treatment, please, send your request to sergei.yakushin@mssm.edu.

Some patients experience more symptoms at specific times of the day. To provide optimal treatment for every patient, your appointment time can be changed after your first treatment day. Please do not schedule other daytime activities for the week of your treatment until after your first appointment with Dr. Yakushin.

Preparing for your appointment

• Medications: In many cases, patients diagnosed with MdDS by a neurologist are prescribed benzodiazepines such as Valium. One of the actions of benzo-medication is suppression of the vestibular periphery organ located in the inner ear. This makes some patients feel better. Intact function of the vestibular periphery, however, is crucial for the success of our treatment. Therefore, we highly recommend stopping taking any benzo-medication 3 weeks prior to treatment. This may substantially elevate your symptoms. Our treatment may not be effective if you do not stop benzo-medication three weeks prior to your treatment. You should contact your physician, who prescribed you the medication and work out a plan to taper off these medications to avoid withdrawal effects. We recommend bringing this medication with you at the time of treatment. To reduce the possibility for your symptoms to be re-triggered by your transportation home, we recommend taking one tablet of benso-medication half an hour prior to a flight (or taking a train, or driving) home. Other medications prescribed by your physician for anxiety, depression, or any other medical conditions or multivitamins have no effect on the treatment and can be taken as prescribed. If you, for whatever reason, cannot stop benso-medication, you should discuss it with Dr. Yakushin (sergei.yakushin@mssm.edu).
• Physical exercise: We do not recommend exercises on a treadmill or elliptical machines. Cyclic movements on stationary machines give a false sensation of motion. This can potentially elevate your symptoms or re-trigger them after treatment. For these reasons, we recommend avoiding these exercises until you are MdDS-symptom-free. Other gym exercises such as swimming (not rafting) in a pool, over ground running, or bicycle riding are OK.
• Transportation: Please arrive to New York City at least 1 day prior to your treatment. Please arrive at the vicinity of Mount Sinai at least 1 hour prior to treatment.
• The majority of MdDS patients are very sensitive to motion. Therefore, transportation is an important issue since it can potentially increase the severity of some symptoms. It is very important to determine the baseline severity of your symptoms, such as the magnitude and frequency of the rocking, swaying, and bobbing while sitting, standing, walking, or lying down. Thus, any prolonged motion prior to treatment can complicate the treatment.
• If you are driving to New York City for treatment, we recommend avoiding sudden stops and accelerations. While driving, sit upright in the front seat, looking forward. As much as possible, avoid looking in side windows. Some people feel better when they are driving rather than being a passengers in a car due to the motion sickness that is frequently associated with MdDS. However, it is important that patients have a sufficient rest prior to the treatment. Therefore, you should decide for yourself whether it is better for you to drive or be a passenger.
• No cruise, ferry or boat riding is recommended for MdDS patients. Some of our patients have several episodes of MdDS. Reoccurring MdDS are longer in duration and stronger each time when induced. Thus, even when you are symptom free, there is a chance that MdDS will be re-triggered by a cruise.
• Accommodations: For the success of our treatment it is critical to obtain several of your parameters accurately. Previous motion due to prolonged transportation, however, can affect the accuracy of our measurements. For this reason, we recommend that if you are arriving from a different state or country, than you arrive in New York City two days prior to treatment. During the treatment, we recommend that you stay within walking distance from Mount Sinai. If you are accepted for treatment, Ms. Schantell Simon will send you a list of reasonably-priced accommodations not far from our lab.
• Activities while staying in NY: To test whether treatment is successful, we ask our patients to perform certain activities, which typically trigger MdDS symptoms, such as going to crowded places, grocery stores, Broadway shows, etc. Since we do not know how you will respond to these triggers, we recommend that if you would like to see some Broadway shows, you purchase tickets for the first two days of treatment.
• No ferries or boats: You can use all types of transportation during treatment, except ferries or boats.

Treatments and testing available

• MdDS Treatment: Treatment lasts four days, typically Monday through Thursday. The duration of each treatment session varies from 10 minutes to 3 hours depending on the patient’s symptoms. To schedule an appointment, please send your request at balance@mssm.edu.
• Motion Sickness: If you have severe motion sickness (but do not have MdDS), and cannot ride the bus, train, plane, or be a passenger in a car, you may need Motion Sickness treatment. Treatment lasts one weeks (two 20 min sessions a day). To schedule an appointment, please contact Dr. Yakushin first (sergei.yakushin@mssm.edu).

Treatment of MdDS

We have treated more than 240 MdDS patients.

The treatment procedures are based on our previous human studies: Readaptation of the Vestibulo-Ocular Reflex Relieves the Mal De Debarquement Syndrome. By Dai M, Cohen B, Smouha E, Cho C, Frontiers in Neurology;5:124. 2014. Since then, the original protocol, however, has been modified and tailored specifically for individuals depending on their etiologies and symptoms. When you come for the treatment, we will first exam and test you for the best intervention.

The goal of our treatment is to reduce and eliminate MdDS related symptoms. The clinical significance was defined by a reduction of overall subjective symptoms by over 50% on a 10-pt scale. Static posturography is also used to have an objective measure of improvement. Overall, we have about 75% successful rare on classic MdDS and 45% successful rate on spontaneous MdDS. These outcomes from our patients have been published in our papers and meeting abstracts shown in this web site.

To prevent a relapse or reversion: Although it is rare, it is possible that there is a reversion when traveling back home or a relapse due to stressful or motion events, To prevent a reversion when you are traveling, you can take a Benzo medication prior to the flight. We will also provide you with a home treatment option in case you need it.

Treatment of motion sickness

Motion sickness during transport occurs daily and is a significant public health problem that affects a large number of people. Motion sickness symptoms are the reaction of autonomic system to the visual and vestibular (head rotation) disturbances produced by transportation carriers. Motion sickness is usually treated with behavioral and pharmaceutical approaches. Behavioral therapy reduces motion sickness sensitivity by exposing subjects to stimuli that had caused stressful motion sickness. Over time, subjects become habituated and sensitivity decreases. While effective in reducing motion sickness sensitivity, this approach is physically and mentally traumatic for individuals. The pharmaceutical approach is primarily to suppress the symptoms and to provide temporary relief. To date, there is otherwise no approach that reduces sensitivity to motion sickness in a non-traumatic way for long periods.

Studies have shown that sensitivity to motion is directly related to a part of the brain that responds to the motion. We have shown that motion sickness can be reduced if the duration of the response is shortened by exposure to a mismatch of visual and vestibular stimuli. This treatment paradigm is less stressful than the usual behavioral treatment and the effect of improvement can last for years and beyond (Dai et al 2011).

We provide motion-susceptible people with the intervention. It consists of 40 minutes of visual-vestibular interaction each day for consecutive 5 days and the strength of the stimuli will be progressively increased to a maximum tolerance level. From our experience, this intervention is extremely effective for those who have car/bus/airplane/escalator sickness.

For details about the treatment, please refer to “Prolonged reduction of motion sickness sensitivity by visual-vestibular interaction” by Dai et al. 2011

Treatment policy

Treatment is provided by Dr. Yakushin, who is not a medical professional. Therefore, he cannot write prescriptions or sign any documents that require the signature of a physician. If you need anything like this, we recommend that you make an appointment with your own doctor at the time of treatment at Mount Sinai.

On the first day of treatment, we determine the objective parameters of your MdDS. We will ask you to stand on a posturegraphic platform while recording the magnitude, direction, and frequency of your body motions. We will determine any abnormalities in your eye movements in darkness. We will determine any abnormality in your posture while standing or walking. The set of symptoms and the severity of individual symptoms is different for each patient. We will ask you to assign a subjective overall score for your symptoms on a scale from 0 to 10, where 0 is no symptoms and 10 is the highest level of symptoms that you ever experienced.

We provide four days of experimental treatment of MdDS. Typically, treatment goes from Monday-Thursday of one week. The details of each treatment will depend on your symptoms and their severity. Treatment starts on the first day after the objective and subjective parameters of your MdDS have been evaluated. The duration of each treatment session depends on your response to treatment and can vary from 10 minutes to three hours per day. We can only treat symptoms. After each treatment session, we typically ask patients to do certain things that would typically elevate symptoms, such as to go to a Broadway show, grocery store, to ride the subway, or visit crowded places.

If you have no symptoms after the first day of treatment, we still ask you to come back the next day to evaluate your postural stability. No further treatment is necessary if you have no symptoms. We may ask you to come back on the third day to confirm that no symptoms were triggered at any time. If visiting supermarkets or crowded places still triggers or elevates your symptoms, we will provide additional treatment.

At the end of the treatment we will obtain objective data and your subjective scores again. We consider treatment successful if the subjective score has decreased after treatment by more than 50% and the magnitude of your postural motion is significantly decreased.

Cases when a patient become symptom-free by day four are rare. Most commonly, we are able to reduce your symptoms more than 50%. Remaining symptoms typically go away within several months after treatment.

According to our data, the effectiveness of treatment does not depend on the duration of your MdDS. The cost of treatment is the same for all patients, regardless whether you are treated for one or four days, or whether our treatment sessions lasted 10 min or 3 hours per day.

Vestibular treatment center personnel

Please send your appointment request sergei.yakushin@mssm.edu. Please do not contact Dr. Yakushin by the phone directly during business hours, since he is treating MdDS patients.

Vestibular Treatment Center: Sergei B Yakushin, PhD

Email: sergei.yakushin@mssm.edu

Office: (212) 241-9349

http://www.mountsinai.org/profiles/sergei-yakushin

Publications related to our treatments

What is MdDS?

https://en.wikipedia.org/wiki/Mal_de_debarquement

MdDS Treatment:

1. Dai M, Cohen B, Smouha E, Cho C Readaptation of the Vestibulo-Ocular Reflex Relieves the Mal De Debarquement Syndrome. Frontiers in Neurolog;5:124. doi: 10.3389/fneur.2014.00124. eCollection 2014. This is the original study that describes the method of treatment we use. To download: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4097942/pdf/fneur-05-00124.pdf
2. Dai M, Cohen B, Cho C, Shin S, Yakushin SB Treatment of the Mal De Debarquement Syndrome: A 1-Year Follow-up. Frontiers in Neurolog;05 May 2017 | https://doi.org/10.3389/fneur.2017.00175. eCollection 2017. This is the original study on 141 patients. To download: http://journal.frontiersin.org/article/10.3389/fneur.2017.00175/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Neurology&id=262852
3. Dai M. Mount Sinai School of Medicine, VOR Readaptation https://mddsfoundation.wordpress.com/2014/11/01/mount-sinai-school-of-medicine-vor-readaptation/
4. Dai M, Yakushin SB, Cho C, Smouha E, and Cohen B. Treatment of the Mal de Debarquement Syndrome in 160 cases. XXIX Bárány Society Meeting, Korea, Seoul, June 5-8, 2016. This is one of our recent abstracts about MdDS treatment, which was presented at the Bárány Society Meeting.
5. The Mal de Debarquement Syndrome (MdDS) is a feeling of constant swaying, rocking and/or bobbing that generally follows a passive motion such as after travel on the sea (the Classic form). It can also occur spontaneously (the Aberrant or Spontaneous form). The associated symptoms include gate ataxia, head pressure, cognitive dysfunction (brain fog), blurred vision, agoraphobia, insomnia, depression and exhaustion. MdDS is likely elicited by maladaptation of Velocity Storage in the Vestibulo-Ocular Reflex (VOR). In 2014, we published the results of treatment of MdDS in 24 patients produced by visual-vestibular re-adaptation of the VOR. There was a high rate of success (70%) after one-year follow up. Here, we report an additional 160 cases treated from Oct 2014 to Oct 2015. Patients: 133 females, 27 males, 130 with Classic MdDS, 30 with Aberrant MdDS. Ages 47±13, 18-82. Duration: 36±48 months (1 mon – 27 yrs). Physical Measures: Fukuda, internal rocking, static posturography, spontaneous nystagmus. The average rocking frequency was ~0.2Hz (1 cycle per 5sec). Primary Protocol: Rolling the head at the frequency of rocking while viewing a vertical axis full-field optokinetic (OKN) stimulus at speeds of 2°/s – 15°/s. Additional Protocols: 1. Horizontal or vertical OKN without head motion. 2. Horizontal OKN and head up/down motion. Sessions: 0.5–5 minutes, 3-10 times per day for 4-5 days. Outcome Measures: Subjective rating of global improvement on a 10-pt scale and static posturography. Specific symptoms such as bobbing, trampoline walking, head pressure, brain fog and vision, etc were specifically reported. Clinical Significance: Defined as a 50% reduction from subjective rating reported on the last day of intervention. Results: The rate of success for all patients was 75% (scores: 6.3±1.9 before, and 2.6±2.1 after). For Classic cases it was 81% and for Aberrant cases 43%. For duration >= 3 years, the rate was 66% (N=54) and for < 3 years, 79% (N = 106). Two patients with a history of more than 20 years had a significant improvement (60% & 69%). Thus, the results are similar to those in our 2014 study. The patients to be treated earlier appeared to have better outcomes compared with patients who had delayed treatments but in the latter group, there was significant benefit. Further results will be reported when the long term follow-up and postural analyses are completed.
6. New Treatment Successful for Rare and Disabling Movement Disorder, the Mal de Debarquement Syndrome (MdDS). NEW YORK, August 7, 2014 /Press Release http://www.mountsinai.org/about-us/newsroom/press-releases/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds
7. Cohen B, Yakushin SB, Cho C Hypothesis: The Vestibular and Cerebellar Basis of the Mal de Debarquement Syndrome. Frontiers in Neurology; 2018 Feb 5;9:28. doi: 10.3389/fneur.2018.00028. eCollection 2018: http://https://www.frontiersin.org/articles/10.3389/fneur.2018.00028/full

Written by others:

1. Worst Nightmare: Feeling Motion Sick Years After a Trip — It Happened to These People. https://www.yahoo.com/style/worst-nightmare-feeling-motion-sick-years-after-a-119851731767.html
2. New treatment successful for rare, disabling movement disorder, the Mal de Debarquement Syndrome (MdDS) https://www.sciencedaily.com/releases/2014/08/140807163557.htm
3. Eliza Strickland, What to Do When Your Brain Insists You’re Always on a Boat http://nautil.us/blog/what-to-do-when-your-brain-insists-youre-always-on-a-boat
4. Mucci V, Perkisas T, Jillings SD, Van Rompaey V, Van Ombergen A, Fransen E, Vereeck L, Wuyts FL, Van de Heyning PH, Browne CJ. , Sham-Controlled Study of Optokinetic Stimuli as Treatment for Mal de Debarquement Syndrome. Front Neurol. 2018 Oct 25;9:887 https://www.frontiersin.org/articles/10.3389/fneur.2018.00887/full
5. Shankar Kikkeri N, Siddiqui JH., Mal de Debarquement Syndrome: A Case Report. Cureus. 2018 Sep 7;10(9): e3270. doi: 10.7759/cureus.3270. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6221536

Useful links:

Our Laboratory (Contact information is out of date): http://labs.icahn.mssm.edu/dailab/

MdDS Foundation: http://www.mddsfoundation.org/?gclid=CIvZr_Oe-MwCFQIfhgodKCoAXA

Motion Sickness Treatment:

1. Dai M, Raphan T, Cohen B. Prolonged reduction of motion sickness sensitivity by visual-vestibular interaction. Exp Brain Res. 2011 May;210(3-4):503-13. doi: 10.1007/s00221-011-2548-8. Epub 2011 Feb 2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3182575/

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