Mal de Debarquement Syndrome

Mal de Debarquement Syndrome (MDDS) is a condition characterised by constant feeling of rocking/swaying. Usually this comes on after a boat ride (hence the name). It can also occur after a plane, train or car ride or even spontaneously. Often patients feel better if they are back in a car, boat, plane or train. There may be overlap with chronic subjective dizziness. Some patients have other symptoms sensory sensitisation.

The cause and best treatment for MDDS are not clear. Some patients improve spontaneously. For other the problems persists. Some benefit from a drug Clonazepam. Other treatments tried include magnetic stimulation (see here).

Recent research by Dr Dai et al in 2014 (see here) has suggested that optokinetic visual stimulation (optokinetic treatment) can help some patients. Patient with MDDS were placed in a room with a screen with a moving black/white stripe pattern (it is important that the whole visual field is covered) while their heads were tilted (rolled see video below) 20 degree from side to side (ear to shoulder alternatively) by an assistant for 3 to 5 minutes, 1 to 8 times a day for 1 week. The pattern either moves from left to right or vice versa. The direction of movement of the visual field (to left or to right) was determined by some balance tests. The sway frequency of the side to side tilt was determined by the patient’s own rocking/sway frequency.

As with any treatment these results need to be replicated before it can be considered a reliable treatment.

I do not have any reliable treatment to offer my patients with this problem at present. I am also not aware of any reliable treatment prior to Dr Dai’s therapy. I recognise many patient with MDDS suffer greatly with this condition. I have therefore modified the treatment as proposed by Dr Dai to allow it be delivered at home.

You Tube recently introduced of 360 degree videos. This therefore, allows optokinetic type treatment at home. Some equipment including (at present) an Android smartphone (a phone model with a built in a gyroscope/accelerometer is required) and a Google Cardboard Type virtual reality (VR) goggles (see here) will be required. The Archos VR Headset allows some custom adjustment for focus and inter-pupillary adjustment. This or similar headset may therefore be more suitable for patient with glasses. The high end phones such as Samsung Galaxy Note and S model have the required built-in gyroscope/accelerometer. If you are planning on purchasing an Android phone for this purpose you will need to check with the retailer if it has this ability. It may be possible to try a phone in the shop one a 360 You Tube video to see if it works as required.

You will also require internet connection usually via WiFi.

There is no guarantee that this treatment will be successful.

I have created a 360 degree optokinetic video. To obtain the optokinetic effect these will have to be viewed with VR Goggles. Looking at a computer screen is unlikely be effective. The whole visual field will need to view the optokinetic video.

I have loaded these videos on to you tube:

Optokinetic pattern with movement to right

Optokinetic pattern with movement to the left

360 degrees video are a new format of video which allows the viewer to see all round via VR goggles. Google (who own You Tube) have created a standard for a type of budget Goggles which can be replicated and reproduced cheaply (Google Cardboard). These type of Goggles can be purchased from various makers (including eBay) for as little as £20. The Archos VR Headset allows some custom adjustment for focus and inter-pupillary adjustment. This or similar headset may therefore be more suitable for patient with glasses. They are designed to work with a smart mobile phone. Android phone can at present play the 360 degree You Tube video format in a way that allows viewing through the Goggles. iPhone’s can not do this at present. It will I suspect, become available to iPhone soon. The key feature allowing a true virtual experience is the ability for the smartphone’s in built detectors to keep the visual field level while the view moves his/her head. Watching a normal video through the Goggles with smart phone does not replicate this.

The viewing angle with these goggles is somewhat limited. It may be possible to replicate the optokinetic treatment using the virtual reality Goggles playing the optokinetic video as carried out by Dr Dai et al.

Prior to carrying out the treatment Dr Dai et al determined 2 pieces of information to guide the treatment: Rotation and Sway frequency.

1. Rotation

In some patient it is possible to determine whether the video rotation to the left or right will be beneficial. This can be potentially determined by a patient walking on the spot with eyes closed for 1 minute. This should be repeated twice. If the patient turns to the left then the video to the right can be used for therapy and vice versa. In Dr Dai et al research vidoenystagmography was also used to determine which video to use but it will not be possible to do this at home without specialist equipment. In some patient it was not possible to determined which rotation to use. In these case the patient was tried with one and then the other to see which provided benefit.

2. Sway Frequency

The researchers used a balance platform and a wrist accelerometer to determines the sway frequency. Again I suspect it may be possible for a independent viewer to look at a patient trying to stand still with eyes close to get an idea of the sway frequency. The patient themselves could also count out the number of sways (while eyes closed) in a minute. This figure can the be divide by 60 to to determine the frequency. In Dr Dai et al paper this averaged at 0.2 Hz. i.e. the patient were swaying at a rate once every 5 seconds. If the sway frequency can be determined or estimated then this can be used to determine the frequency of rolling/tilting of the head during the treatment session. An assistant can then tilt the head from side to side (bringing the ear close to the shoulder) at this frequency during the treatment session. Assume we have a case with a frequency of 0.2 Hz. Starting with the head in neutral position followed by tilt to left then to right and then straight should take 5 seconds.

Setting up android phone for viewing 360 videos

Head Rolling/Tilting approximately 20 degrees / 0.2 Hz., while wearing a Google Cardboard VR Goggles.

Treatment

Dr Dai et al treatment consisted of viewing the optokinetic video stimulation (either to the left or right) while the head was tilted (rolled) 20 degrees side to side by an assistant at the sway frequency (see 2. above) for between 3 to 5 minutes. This was repeated 1 to 8 times a day for 1 week.

Once the VR Googles have been obtained they are assembled as per manufactures instructions. The relevant You Tube video is started on the smart phone (using the You Tube app). If the video is paused or the screen taped a menu appears on the screen. On the right upper part of the video are 3 dots in a vertical row (setting menu). This is pressed and another menu appears. Press the Cardboard icon. The video now splits in to 2. The video will also restart. The smart phone can now be inserted in to the Goggles. Looking straight ahead will give the optokinetic stimulus. Looking down or up reveal that impression you are in a tube. The head can now be tilted 20 degrees side to side at the sway frequency for the desired amount of time. Some patient may not be able to tolerate this very well and may feel nauseous.

There is also the theoretical potential for some patient to feel increased dizziness.

In the treatment by Dr Dai et al the patients scored their problem between 0 (no rocking) to 10 (most severe) before and after the treatment. The patient average score improved from 6.8 to 0.7. The patient rocking was also assessed with a balance platform. The results that Dr Dai et al have obtained seem impressive. From the 24 patient treated 70% improved and none deteriorated.

I would not recommend this treatment for patients who have photosensitive epilepsy.

News

 

Email from Polly Moyer of Action for MdDS:

 

Study Description:
 
The Mal de Debarquement Research Group from Western Sydney University has teamed up with the University of Antwerp and have just launched a new survey focussing on those who had/have MdDS during pregnancy
 
More specifically this survey is directed to: 
– people who developed MdDS before their pregnancy, that are not currently pregnant, but can recall symptoms while pregnant; 
– people who developed MdDS before and are currently pregnant while completing the survey;
– people who are believed to have developed MdDS symptoms while pregnant; 
 
Please do not complete this survey if you do not fit in these categories. If you developed MdDS symptoms after pregnancy this survey is not directed to you. 
 
Feel free send this to anyone who you think can fit those criteria and would like to take part in helping us understand more about how pregnancy affects MdDS symptoms. Here’s the link: 
 

 

Dear Sue, Kelvin and Darius,

 

There are two current research surveys available for patients with MdDS that are applicable in the UK.  I’d be very grateful if you could circulate these to your colleagues and any patients who are not on facebook.  The first link is for a survey about spontaneous/other onset (IE onset of symptoms that wasn’t caused by a motion trigger).  This will stay open until either the middle or end of July.

 

https://uwsssap.co1.qualtrics.com/jfe/form/SV_cFSMIHaBDxNBZqZ

​​

The second link is about the impact of pregnancy on MdDS and the researchers have asked me to send this with the following information:

 

 

 You are invited to participate in a research study being conducted by Dr Cherylea Browne, Lecturer in Human Anatomy, School of Science & Health and Ms Viviana Mucci, Doctoral Student, Antwerp University Research centre for Equilibrium and Aerospace (AUREA) & Laboratory of BioMedical Physics (BIMEF), University of Antwerp. This research aims to contribute to the understanding of the underlying mechanisms of Mal de Debarquement Syndrome (MdDS). Specifically, this study seeks to collate data regarding the effects of pregnancy on MdDS symptoms. We aim to collect survey data from MdDS patients who are currently pregnant or who were pregnant whilst having MdDS. Please tag or share to anyone who might be interested in taking part in our research. Click here to complete the survey – https://uwsssap.co1.qualtrics.com/jfe/form/SV_cu811naTKs6CHd3

Cherylea, Viviana and the MdDS Research Team

Many thanks and all best wishes,

Polly

​Polly Moyer

Co-founder of Action for MdDS UK

 

08/05/2018

Darius,
The lovely people at the Migraine World Summit have asked us to nominate topics for 2019.  Not surprisingly there have been loads of requests about Vestibular Migraine and I’ve submitted this one:
Topics are chosen according to the number of votes they get so I doubt this will make the cut.  But if there’s enough interest it might get included in any discussion about VM.  If you’d be willing to post the link on the MdDS part of your website, that would be great 🙂
Hope all’s well with you.
Polly