I often get asked by patients how spontaneous cases of MdDS (Mal de Debarquement Syndrome) compare to motion-triggered cases. If you’ve acquired this condition either by some sort of passive motion or for no apparent reason whatsoever, you probably have a lot of questions and rightfully so. Over the past few years of working with both spontaneous and motion-triggered patients, I’ve seen a pattern and at the very least I hope to provide some insight to people out there who are living with this condition.
Here’s what I can tell you as a result of comparing several test findings (Comprehensive Bloodwork, Organic Acids Testing, Genetic SNP Reports, Hormone Metabolites) amongst both motion-triggered patients and spontaneous patients.
SPONTANEOUS VS MOTION TRIGGERED FINDINGS
Neurotransmitters- It appears as though there is a similar culprit. Both sets of patients have an underlying complexity with the breakdown and metabolism of catecholamines like epinephrine, norepinephrine and dopamine. Across the board, I see a slow metabolism of these neurotransmitters. Imagine if you were functioning in a low level “fight or flight” mode all the time and you didn’t even know it because it’s all you’ve ever known! It’s kind of like a Microsoft computer with 50 windows open. It’s bound to stop working correctly! This is also taxes the HPA axis. Hence the reason most MdDS patients, spontaneous or not, usually have very high diurnal cortisol levels (also note that high levels of cortisol quench the production of Secretory IgA- an important antibody that helps support the immune system- more on that below).
Methylation– An under-functioning methylation system is also evident in both cases. What does this mean? Well, a properly functioning immune system is highly dependent upon an optimally functioning methylation process, otherwise inflammation, neurological and immune dysfunction ensue. In spontaneous cases, it is not unlikely to discover other auto-immune conditions such as Hashimoto’s, Lupus or Rheumatoid Arthritis, Fibromyalgia, joint pain and multiple chemical and/or food sensitivities. To clarify, many motion-triggered patients also have a degree of immune dysfunction, but the ill-functioning immune system does not appear to be the primary trigger, it’s the motion that tips the scales for these patients. For spontaneous patients, it seems that the short-circuit in the immune system, and/or the associated neurological inflammation, could be the actual trigger. There are many different scenarios for how spontaneous MdDS begins in patients, but the bottom line is that these patients have extremely sensitive immune systems and neurological systems.
Improvement and Remission– Improvement or remission for either Spontaneous or Motion-triggered cases seems to differ depending upon the amount of time that they have had MdDS, the age of the patient, hormone imbalance and the degree of immune dysfunction. Within the cases that I have followed and supported, I have witnessed a faster remission in patients that are motion triggered and are prescribed a therapeutic dose (not a prophylactic dose) of benzodiazepines (per a written prescription) within 6 months of onset. In this case, I believe the sooner the better. The benzo itself may not always work to stop it completely, but if taken early on, the odds seem more favorable. If the MdDS does not stop with the therapeutic dose, it usually takes patients to a more tolerable level and from there we can work on balancing the hormones and neurotransmitters and implementing specific exercises and modalities.
It is my opinion that spontaneous cases, and chronic motion triggered cases fare better with the use of SSRIs or SNRIs. The one that I have seen have the greatest effect is Zoloft. However, these patients usually need additional help balancing hormones (or Hormone Replacement Therapy) and neurotransmitters and will also need to implement ocular and proprioceptive input exercises, as well as practice relaxation techniques and decrease any potential triggers.
FINAL THOUGHTS
Please note that when working with patients with MdDS, I don’t claim to offer a cure or promise remission. (That being said, our practice has had several patients find remission and we are very excited about that!) I do, however, work from a place of determining the “why” behind this condition, so that we can put together the pieces of “how” we can potentially reach remission. As a functional medicine practitioner, I approach this condition from a foundational perspective and from several directions. In a sense, I get to be a detective and I go looking for anything that can affect your neurological system. I also work as an advocate and a liaison between you and other providers to help support you in this process.
If you are reading this and you didn’t already know, I have also suffered with MdDS. During my last episode, I vowed that I would work to serve and help others if I reached remission. So here I am. I will continue to share my findings and my thoughts on this condition in order to provide any helpful information to those suffering with MdDS or MdDS-like symptoms (vestibular migraines, cervicogenic headaches, etc.). My heart is with you and I would be honored to take care of you.
Warmly,
Dr. Ginger Wolfe, DC, DABCI