MdDS (Mal de debarquement Syndrome) treatments
The main MdDS page is here: (note that we are not that careful about capitalization of MdDS, MDDS, MdDs, etc — we all mean it to be the same thing).
The usual treatment strategy for MdDS is to attempt to make the patient comfortable, while waiting for the MdDS to end by itself (typically within 6 months, see table 1). If "waiting it out" doesn’t work, then a recent development is that some patients go for roll-adaptation (see below). There are also some medications worth trying to suppress rocking or to speed up resolution of the symptoms.
This page discusses some of the more discussed treatments for MdDS (mal de debarquement syndrome), with especial attention to the amount of evidence available to support their use. Of course, "lack of proof" is logically not at all the same as "proof of lack". So perhaps some of these treatments will eventually be shown to be effective for MdDS.
There are sections: medications, physical therapy, physical devices, and magnetic stimulation.
- Gaba agonists — mainly the benzodiazepines
- Klonopin (generally the most used)
- Diazepam (valium) (there are many others, all with similar response)
- Tiagabine (we have experimented with this, without much success)
- Low doses of clonazepam, a benzodiazepine medication related to Valium (diazepam), are helpful in most persons with MdDS. There is some worry that these medications may prolong the duration of symptoms (although this worry has not yet been tested by a research study). These medications increase GABA. These benzodiazepine medications are also addictive, which is worrisome. We do not favor constant use of klonopin for MdDS. Rather, we usually suggest occasional "emergency" use.
- We have also had some recent success with treatment of MdDS with venlafaxine – -this is an antidepressant that is very useful in migraine. We use the same protocol as for treatment of migraine (top dose typically only 37.5 XL). Others have reported (in 2016 at COSM meeting) that treatment with migraine medications (e.g. nortriptyline, verapamil) is successful in about 60% of the time. Ghavami et al (2016) reported improvement in 15 patients with MdDS administered a mixture of lifestyle changes, as well as verapamil, or topiramate, or nortriptyline, or a combination. . While encouraging, this needs more investigation. With venlafaxine in particular, the obvious question is how much of the effect is from the effect on mood and how much is from the effect on whatever the core driver is for MdDS. Other medications (such as topiramate or verapamil) have little effect on mood, but they have their own issues (e.g. word finding problems with topiramate, low blood pressure with verapamil).
- Occasional patients have reported improvement from treatment with Neurontin (gabapentin). This is generally in very large doses (e.g. 2400 mg, although one would think that 900 would be plenty). We don’t prescribe this anymore for MdDS because we think the side effects exceed the benefits.
- We have also had occasional patients respond to tiagabine (Gabatril) (another gaba medication – there is a theme here !)
- Occasionally persons with rocking due to other causes respond to one of the SSRI type antidepressants, and this may also be worth considering. Paroxetine is the most common SSRI used in persons with dizziness.
- Somewhat similarly to venlafaxine, as of 2014, there are a few reports of a good response to Sinemet, which the brand name of a medication (carbidopa-levodopa) that increases dopamine. As dopamine is a precursor to many neurotransmitters, including norepinephrine, increased dopamine may be working downstream to increase the levels of these neurotransmitters. It seems unlikely to us that dopamine deficiency is the cause of MdDS, as there is an immense population of people with dopamine deficiency (i.e. Parkinson’s patients), that hugely exceeds the number of people with MdDS or rocking.
- "One-off" treatments — we are not sure, would be interested if others have had a good or bad effect.
- We have been told that non-steroidal anti-inflammatory medications have helped MdDS, but this does not seem to be a general pattern. Perhaps the mechanism here is quieting down migraine.
- phenytoin and carbamazepine (or oxcarbazepine) may be useful in reducing symptoms. Phenytoin has been reported useful in motion-sickness. A controlled trial of these medications may be in order if more evidence accumulates.
- We have been told that the "non-THC" form of medical marijuana, a CBD product, was helpful in several cases. Again, more evidence is needed.
Medications that don’t work for MdDS (athough no formal studies):
After MdDS has started, most medications that work for other forms of dizziness or motion sickness are ineffective. Conventional vestibular suppressants that affect anticholinergic pathways such as meclizine and transdermal scopolamine are not helpful in MdDS. (Hain, Hanna et al. 1999) I.e, antivert (bonine, meclizine), dramamine, and scopolamine seem to be of little use. The author has tried out many other medications, and has also not found response to more unusual agents for dizziness such as betahistine, baclofen, or verapamil.
Medications to stop and procedures to consider stopping (no studies here either).
- Hormonal medications
- estrogen or progesterone might be problematic because nearly all MdDS patients are women, and most are of child-bearing age– it might be worth a trial of stopping them if this is practical. There is no published data on this, and all that exists are anecdotes.
- We have been told by one person that testosterone (for another purpose) was associated with remission of MdDS. Another told us that testosterone made them worse. While MdDS is associated with estrogen (as it mainly occurs in women), it would also follow that it is associated with a relative paucity of testosterone. Right now, this is not something that is being actively investigated, but we would be interested in more stories (if they exist) about what has happened in situations where testosterone is administered for another purpose, in an individual with MdDS. So far, this is just on an anecdotal level.
Physical Therapy for MdDS
Physical therapy: The evidence for a positive role for physical therapy in MdDS is somewhere between nonexistent and weak (Hain and Helminski, 2007). In our original study of MdDS (Hain et al), 10/15 persons who had vestibular rehabilitation reported improvement, but the natural history of MdDS is to improve, and one wonders what would have happened had they not undergone rehabilitation. In other words, this was an uncontrolled study, which sheds no light on whether PT is helpful. Cha commented in passing that "only rare patients seem to be cured by vestibular therapy" (Cha 2012). In fact, the only peer reviewed literature describing physical therapy treatment for MdDS are two case reports (Zimbelman and Watson 1992; Liphart et al, 2014). Of course, it is not known how these cases would have done without PT. In other words, these were not controlled. In general, while many individuals with MdDS undergo vestibular rehabilitation, again because of a lack of controls, it is not possible to determine whether they did any better than persons who were not treated (Hain, Hanna et al. 1999). Thus the efficacy of vestibular rehabilitation for MdDS is unknown.
While we find this idea very doubtful, if MdDS is indeed due to inappropriately high weighting of somatosensory input, vestibular physical therapy protocols that teach down-regulation of somatosensory input seem worth trying. Liphart (2015) reported results of "sensory reweighting therapy in a single atypical case. The single subject "felt she had improved 50%". This is not too different from results of roll adaptation discussed above. A controlled trial of vestibular rehabilitation in a large number (i.e. 20) of MdDS subjects could be helpful in clearing up this question (hope someone funds this !). Our guess is that results of vestibular rehabilitation treatment would not be any different than no treatment.
If MdDS is instead caused by an internal oscillator developed to predict boat motion, one’s treatment strategy should be aimed at manipulation of psychological variables rather than somatosensory integration. Patients need to ignore their aberrant internal signal, in the same way that most persons with tinnitus eventually develop an ability to ignore abnormal internally generated sounds. Treatments that decrease vigilance, obsessiveness, and anxiety as well as "tincture of time", would be the optimum strategy. CBT (a form of psychotherapy) is often successful in treating tinnitus. We are not aware of this approach being tried for MdDS. Against this general idea is that the roll adaptation treatment discussed above does seem to work.
Physical treatments for MdDS. There is a little data here.
There are currently several "physical treatments" offered for MdDS. By physical, we mean that the main intervention is a device.
Figure 4 from Dai et al, 2017, showing percentage of patients with a reduction of 50% or more on symptom score, as a function of time after treatment.
Dai et al (2014) reported successful treatment of MdDS in about 60% of cases using a procedure involving optokinetic visual stimulation and tilting of the head about the front-back axis (roll). The procedures involves multiple short sessions over a week. The study was uncontrolled. According to Cohen et al (2015), more than 100 patients have been treated wit this protocol, and the "cure rate" is similar to the original report (about 60%). A recent follow-up (Dai et al, 2017), reported outcomes in 141 patients (122 females, 19 males). Their criteria for "significant improvement" was a reduction in the score on a symptom questionnaire by 50% or more. Patients were categorized as "classic" or "spontaneous" MdDS. They reported "significant improvement" in 78% of "classic MdDS", and 48% of "spontaneous MdDS". At one year, "significant improvement was maintained in 52% of classic, and 48% of spontaneous patients". They found that success was "generally inversely correlated with the duration of the MdDS symptoms and with the patients’ ages".
This protocol and result has been replicated in about 25 patients at Chicago Dizziness and Hearing, although we have discontinued this protocol due to logistical issues. As noted above, we are dubious that roll adaptation explains MdDS, and for this reason we are also dubious about the rationale for this treatment. Still, it seems harmless and given that it seems successful clinically, we think it reasonable to try in MdDS patients that have not resolved with time. This does require travel to New York or another location that offers this treatment.
Recent reports by Dai and colleagues (2017) suggest that the optokinetic treatment is more successful in the classic motion triggered "MdDS", than the group variously called "rockers" — also known as "spontaneous" MdDS, or non-motion triggered MdDS (which is an odd construction — lack of motion triggering for a syndrome named for "debarquement"). The initial rate of success is higher in persons who have had it for shorter times (e.g. 1 year as opposed to 3 years).
After treatment, Dai et al (2017) found that there was partial regression, particularly in the "spontaneous" group, over about a year (see above for results in the "classic" MdDS group, that did better than the spontaneous). So far, a blinded trial has not been reported. We hope that this occurs. We no longer offer this treatment in our practice in Chicago. Logistics were just too difficult. We still maintain a home program page, for previous patients who are interested in a refresher. This requires a login however.
The roll adaptation protocol of Dai et al (2014) could be reasonably viewed as a type of habituation. Motion sickness has been treated successfully with habituation (Dai, Raphan et al. 2011), and one might reasonably argue that MdDS, being a motion sickness variant, might also respond to a similar approach. Habituation entails a down-weighting of motion input, and can reduce the long duration vestibular responses commonly associated with motion sickness susceptibility (Dai, Raphan et al. 2007).
Although there are well developed self-directed motion habituation protocols such as the PUMA exercises (Puma 2010), there are presently no published reports of their efficacy in MdDS (or motion sickness for that matter). Nevertheless, we are sympathetic to the general idea that things that make you feel worse (when you are dizzy) usually does result in some improvement (if you can stand it). The Puma protocol exercises are just so extremely stimulating that so far — nobody has been able to tolerate them for more than a session or two. The Puma protocol exercises can be bought on the web in the form of a DVD from Dr. Puma’s website.
The Bertec and Gyrostim devices — unproven treatments.
Bertec VR device. (https://bertec.com/) Gyrostim device. This image is from a chiropractic practice). There are an immense number of images and video’s of this device easily found with a search.
Bertec has a MdDS protocol in their very cool looking balance device, dynamic CDP, as shown above(https://bertec.com/). This device appears to be basically a visual stimulator with a posture platform underneath it. It is probably better than the TV array (that we used in our clinic), or the OKN drum (used by Dr. Dai), as it is more "immersive" than our flat screen, and it does more axes (than the drum). We don’t see why the posture platform is helpful. We were disturbed in interviewing an MdDS patient who told us that this device was being used for treatment (not very successful), using a 3 times/week 1 hour protocol. To us, this seems to be not enough. Our thought is that any "device" based treatment, that is successful, will take a lot of time (i.e. half of a week, full time), and because it "locks down" both the patient and the room and the device, be very costly. We don’t think there will be any one hour treatments and cures, or for that matter, series of 1 hour treatments 3 times/week for 8 weeks with cures.
The "Gyrostim" device, above to the right, is a recent addition to the procedures advocated for treatment of MdDS. This device is mainly found in Chiropractic practices (who call themselves "functional neurologists"), as well as in a physical therapy practice in North Carolina. It is a very wild looking device which resembles a carnival ride like the "tilt-a-whirl". While we are not sure about it’s effectiveness or lack thereof, Gyrostim treatment is unencumbered by any scientific literature, aside from the following:
According to an email that I was sent on 6/13/2019, Dr. Kim Fox of AVORA health centers (Kim is a doctor of physical therapy) presented an abstract on treatment with the Gyrostim at the "International Congress on Motion Sickness", on July 2019. The Gyrostim protocol was called "SMART" training, for sensorimotor, multi-axis, rotational training, combined with "mindfullness breathing, relaxation and grounding" techniques. The abstract does not mention a placebo control and it is called a "retrospective chart review". So a rather low level of evidence, but at least there is a start.
Although the Gyrostim is just a device, it does seem to be used in some suspicious contexts, and we have more discussion about the Gyrostim device on our "fraud" page. Some of the MdDS patients who have been treated with the Gyrostim provided me with some comments about their experience. These are found here.
The Gyrostim resembles a ride we took once in an amusement park. It seems to do both Yaw and pitch. In other words, it is a "pitch while rotating" device (yaw is the rotating part). It doesn’t seem to have any optokinetic component, although the subjects may do some visual tasks during the ride. The old literature on these stimuli suggests that they are very nauseating (Raphan et al, 1983; Raphan et al,1999) . Nevertheless, as the time that people report being "exposed" to the gyrostim is generally very short, about 60 seconds, perhaps this doesn’t matter.
Our take on these is that anything that provides multi-axis visual-vestibular stimulation will probably habituate the vestibular system, and has a reasonable chance of helping MdDS, although there is also a high likelihood of causing nausea and vomiting. Judging from previous literature about habituation, it is best to "batch" multiple sessions. The protocol used in the Dr. Dai treatment is 4 sessions/afternoon, with about 10-15 minutes of exposure each session. This seems pretty reasonable.
We would think the Gyrostim might also work if people were exposed to it for 10 minutes at a time, 4x/day, but the issue would be tolerability (i.e. vomiting), and also because this device looks pretty fancy, high cost. We are a bit dubious that this device can be used to treat MdDS for patients requiring 4 10-15 minute sessions of treatment/day for a week.
From the reports we have been provided from patients that had Gyrostim exposure, it appears that the duration of rotation is actually about 30-60 seconds, and that this is provided for an undisclosed number of repetitions/hour. There isn’t much detail given by the successful patients. Presumably the duration is short to avoid motion sickness. If there is only a few minutes of stimulation/hour, it is difficult to see how this works. It is well worked out in other literature that habituation takes a lot of time. Sort of a "no pain — no gain". If it isn’t habituation, how do these brief (?) exposures for 5 days, cure MdDS ? It is very puzzling.
Well given the claims of high efficacy, it should be very easy to prove that the Gyrostim works for MdDS. We would like to see the results of a series, on the Gyrostim device, including roughly 20 MdDS patients. It is difficult to see how one could provide a placebo control, and also difficult to see how one could find an objective outcome measure. Perhaps the time constant of a rotatory chair step response would work, as this has been used in older studies. But a good start would be just to do some before/after surveys on a group of people with well defined MdDS. We would not expect 100% success, but a general trend towards improvement might advance the field.
Neither of these devices combines multi-axis with visual stimulation. Combine Bertec with Gyrostim. So there is still room for more gadgets ! We would think that the military must have these things (they are called flight simulators).
Our thoughts about more practical devices, including virtual reality.
We suspect that simpler approaches, such as the home MdDS treatments, or the "PUMA" exercises, might be as effective, given that one is willing to put up with a lot of nausea.
We also think that a virtual reality (VR) type device (now they are down to about $200/Oculus Rift), combined with an active head movement protocol, might be fairly cost effective. Yakushin et al (2020) reported good results in a small group of 5 patients treated with VR. Certainly one could program a VR device to present an optokinetic stimulus that rotates with orientation to gravity. This is the same idea as the Dai protocol, just implemented with less cost.
Along these lines, I have been told that the Newport-Mesa audiology practice in California offers a VR based treatment for MdDS (rented out). The general idea of using VR to implement vestibular habituation seems very reasonable to me. We don’t see why it should be so expensive however. Right now, the lack of evidence or detail about the methodology of the Newport-Mesa process, makes this approach a bit worrisome. In addition to having no published evidence that it works, there is also no explanation as to what is happening. You can read more about the Newport-Mesa claims of "measureable, clinical improvement" here. Hopefully, this group will publish their results in a peer-reviewed publication. .
We think that what matters is how much you can reasonably stimulate the vestibular system, without having the person "bail" due to nausea. Protocols that gradually "ramp up" exposure, would seem fairly logical. Procedures that use the coriolis effect or pseudo-coriolis to create vestibular conflict also seem very reasonable. I would think that any successful device would also involve some nausea.
Magenetic stimulation of the brain for MdDS.
Dr. Yoon Cha, has pioneered this research effort. (Cha 2012, 2013; Chen et al 2021). The idea here is that by using magnetic fields to temporarily change the electrical activity of the brain, MdDS might be alleviated. Our understanding of this effort is that whatever positive effects are elicited, they are temporary.
Repetitive transcranial magnetic stimulation (TMS) over the dorsolateral prefrontal cortex was reported by Cha to be associated with “short-term symptom improvement”, in a pilot study of Cha in 2013 as well as helpful in 5 of 10 subjects in more recent studies of Guofa et al (2015) and Pearce (2015). More study is needed of this treatment modality for MdDS. In TMS, generally any changes are temporary. For example, although TMS can be used to treat depression, one needs to do it over and over again every week.
Chen et al (co-authored with Cha) wrote in 2021 "Using electrophysiological source imaging and a data-driven method, we identified network-level connectivity changes in EEG that correlated with symptom responses after completion of multiple sessions of cTBS. We further determined that connectivity changes demonstrated by EEG during test sessions of single administrations of cTBS were signatures that could predict optimal targets." In other words, changes in EEG associated with "continuous theta burst" treatment (a variant of TMS), help identify targets. This makes some sense, but doesn’t tell us if this treatment is a good one.
Dai et al (2017) commented that "Since the process producing the MdDS most likely originates in the velocity storage mechanism in the brainstem, magnetic cortical stimulation is likely to be ineffective in producing long-term relief." Our perspective on this comment is that in reality, we don’t think the "process producing the MdDS" has been clearly identified, but given that in TMS changes are generally temporary, the timing comment is likely correct.
Research is needed !
There are many open questions concerning treatment of MdDS. Here are a few:
End of Summer & End of Dizziness
I have had a couple of amazing emails from fellow vestibular sufferers who have found my blog recently and discovered something helpful in it. I can’t tell you how much that means to me. If I can help one person feel less along in this very lonely journey, writing this blog has been worth it. There are so many vestibular disorders and we all have our own path to hopefully find a solution, but the lonely journey, where no one surrounding you understands your perception of the world is a difficult one. You are not alone!
The reason I stopped writing is that I RECOVERED! My energy and attention returned and I shifted them away from my illness and towards my family and my business. What a gift that has been. I also developed some understanding about where advocating for vestibular awareness fits into my life, separating out my professional and personal relationship with it (since I’m a PT!). I have always played around with the idea of using my experience to switch my specialty to vestibular rehab, but I now realize I’m way to emotional about it because of my own experience and all of the mistakes that went down. So that is settled. I will continue with my passion for pediatrics and will keep my advocacy on the personal level (that’s not going away!).
The two things that boosted my recovery in addition to time after the surgery and treatment of the endolymphatic hydrops, was vestibular rehab, specifically doing exercises with my eyes closed to get my vestibular system back in gear, and using CBD oil. A month into taking the CBD oil is when everything changed from me feeling like I was “getting better” to me attacking the world and really living. Wowza! Its powerful stuff and I have since learned how it has helped so many people with different issues. In addition to the physical benefits, the psychological benefits have been amazing. I have never had anxiety through all of this, but it settles worries and feeling overwhelmed, balancing you out. I’m definitely a believer in this miracle plant!
I have had a couple doses of reality tossed in there. My endolymphatic hydrops (EH) is still there and seems to be the culprit of some problems when I push too hard. I seem to have found some limits where the ear still causes problems, but the doctor said EH will last 1-2 years, so I don’t look at it as a long-term problem (can’t believe 1-2 years doesn’t sound long to me anymore lol!). My eyes do get stressed since my vision got a bit messed up from the whole thing. I will probably do some vision therapy in the future, but for now I have prism glasses that help dramatically. I couldn’t even tolerate them before surgery because the triggered the MdDS…but that’s another thing. The MdDS is gone. It was apparently another byproduct of the PLF hole in my ear, rather than a disorder that came on its own. So far I have experienced many triggers that would have caused the rocking to come, such as kayaking and long drives, and haven’t had a problem.
It has definitely been a lot to process all that has happened. As I spoke about in the last post, there is grieving to do for time lost and lack of memories and relationships because I wasn’t really living but surviving and trying to give my children good experiences. But I’m an optimist and an in-the-moment thinker, and so I will live in this beautiful moment of health, feeling grounded, and feeling like I can take on the world. I feel those feelings when they come, and then I take a step forward into today.
I continue to go through my day keenly aware of the experiences that would have previously caused a problem and are now no big deal. That awareness is pretty mind blowing at times. Here are some recent ones:
-walked down a long hallway in a hotel and the carpet pattern would have triggered me
-walked in a large store with florescent lights to pick up school supplies
-vibration from a little train ride in an amusement park
-vibration from the vacuum cleaner
From little things to big things, everyday experiences and fun special times, were all filled with things that made me sick. Sick where no one could see, but my internal experience was altered and condensed into a tiny box trying to survive another day.
Its a beautiful gift to break out of that box and tackle life the way I have only dreamed of.
I’m so grateful that I found this new doctor. He opened a door that no one knew was there.
I’m leaving tomorrow for a few days at the beach with my family. Last year at this time, a week vacation at the beach was honestly pure torture. I did it for my kids, but it was horrific for me and much of it was spent hiding in my bedroom resting while family and friends spent time with my kids. The heat, looking at the ocean, moving water…my body couldn’t handle these things. I am so excited to spend the next few days together, put the phones away, and just have fun.