Living with Mal de Debarquement Syndrome
Stuck on the Boat: Coping Strategies for Sufferers
Mal de Debarquement Syndrome (MdDS) is an illusory, persistent sensation of motion that occurs most commonly after a boat cruise or airplane flight. Many people often experience this sensation temporarily after disembarking, but in the case of MdDS sufferers it can persist for months or even years in some people. Symptoms are usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion such as walking or driving. MdDS is often more commonly referred to as Disembarkment Syndrome.
Diagnosis
Unfortunately, many doctors are unfamiliar with this disorder. Consequently, there are numerous MdDS sufferers who are initially misdiagnosed before receiving a correct diagnosis. MdDS is often mistaken for other vestibular disorders, particularly Meniere’s Disease and Benign Paroxysmal Positional Vertigo, both of which share similar symptoms. Ideally, an Ear, Nose & Throat specialist should be consulted. Diagnosis is made by the patient’s symptoms, and by ruling out other possible disorders.
Symptoms
The symptoms of MdDS are many, and vary for each individual. The most commonly reported symptoms include:
- Rocking/Bobbing/Swaying Sensation
- Difficulty Concentrating
- Bouncing/Shimmering Vision
- Sensitivity to Light and/or Sound
- Disorientation
- Headaches
- Intolerance of busy patterns
- Imbalance/Staggering Gait
- Confusion
- Ear pain/fullness
- Fatigue
- Anxiety
- Depression
Treatment
Unfortunately, there is no "cure" for MdDS. There are some suggested treatments; however, these have a relatively low success rate. Some of these include: walking while watching the horizon; vestibular therapy; tricyclic antidepressants; and benzodiazepines. Anecdotal evidence suggests that benzodiazepines have the greatest success in rendering MdDS symptoms more tolerable.
How to Cope
The symptoms of MdDS can be extremely debilitating. Once diagnosed, it is important to practice coping techniques to help manage this condition. The following suggestions will help to assist you in the daily struggle to alleviate symptoms:
- Reduce Stress. This is extremely important, as stress is a huge trigger that increases symptom severity.
- Get Enough Sleep. Lack of sleep causes fatigue which can greatly exacerbate the motion sensations.
- Join a Support Group. It is important to recognize that there are others living with this disorder and that you are not alone. One good resource is the MdDS Foundation. There is a wealth of information to be found here, as well as access to an online support group.
- Get Help from Family and Friends. As this is an “invisible” condition, many people do not understand it, and may not recognize that a sufferer is experiencing often debilitating symptoms. People close to you may often forget to ask you how you are doing, and this may make you feel isolated. This is an unfortunate side effect of the condition; however, it does not necessarily indicate they are insensitive, they are likely just uninformed about the disorder. Take the time to provide them with materials they can read; and verbally ask for their support.
- Exercise. Physical exercise is great for stress relief and helps calm the nervous system. It will also aid in improving one’s sense of balance, which will likely be affected by the disorder. Yoga, Tai Chi and Pilates are good choices, as they work directly on the vestibular system, and have other anxiety-relieving benefits as well.
- Take Time Out. It is easy to get wrapped up in focusing on the symptoms of MdDS. Taking time out for some fun activities is a great distraction.
Remember, although this is an extremely difficult and frustrating condition, it is not life-threatening, but rather life-altering. It is possible to live a fulfilling life with MdDS; it will just require more effort. Always try and think positively, difficult as this can be sometimes, as a positive mental outlook will go a long way towards fostering a healthy attitude vital to managing this condition.
Click here to read a personal account of a woman's daily struggle with MdDS.
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