Mal de Debarquement Syndrome (MdDS) Treatment at Mount Sinai

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:

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:

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.

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:

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

Treatments and testing available

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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