Back To The Beginning

What does mal de debarquement mean?
Mal de debarquement (or mal de débarquement) syndrome (MdDS, or common name disembarkment syndrome) is a rare neurological condition usually occurring after a cruise, aircraft flight, or other sustained motion event. The phrase “mal de débarquement” is French for “sickness from disembarkation”.

Mal de debarquement – Wikipedia

I thought I’d go back to the beginning because everyday someone somewhere is saying “What The Hell Happened To My Life”.  Recently I was in a Neurologist office for a nerve conduction study. I forgot to take a brochure on MdDS so I asked him was he familiar with this Vestibular Dysfunction. I got the traditional you are silly and you have 4 heads because there’s no such thing look. It just floors me that a doctor who deals a lot with neurological disorders and diseases doesn’t know anything about MdDS. Why? They say it’s a rare disorder. Maybe it’s just under diagnosed. If you don’t know what it is and have never heard about it, how can you diagnose a disorder that destroys lives, marriages, livelihoods, and much more. Ask a person with MdDS what is the simplest task you do daily, that is the hardest thing for you to do daily. Some will answer get out of bed. Others taking a shower or brushing their teeth. A normal person is scratching their head and thinking what, huh?  If a patient with MdDS can barely do the easiest task daily, imagine that they have a small child to care for, has to work, has a stressful on their feet job, has a spouse and/or friends who just don’t get it. My favorite saying is they don’t get it, until they get it.

Now let’s look at research for a cure. I think there are 4 doctors who are actively researching this disorder in the USA. There is Dr Cha, Dr Dai and I believe 2 others. They’re may be more who don’t get recognition but are knowledgeable enough to help, they are the clinicians. There is a piece of equipment called a GyroStim. I accidentally found this by a gentleman who had a stroke and was using the GyroStim for balance and cognition. I called GyroStim, got a list of locations and in May took a chance with a doctor who had treated MdDS for 10 years with Vestibular Rehabilitation Therapy, but had never tried treating with the GyroStim. She is an out of the box thinker and after knowing the risks and benefits we moved forward. It’s coming up on 6 months and I’m still in remission. This is experimental and needs more research and she is working towards that end. The name of the clinic is Avora in Asheville, NC. The name of the Doctor is Dr. Kim Fox. You can do your research, talk to GyroStim about other locations that may be closer for you. Just be sure the clinic knows how to treat MdDS and has a “target” system in the GyroStim.

For the Family and Friends of persons with MdDS. We may look perfectly fine on the outside, but inside we are suffering daily. Instead of saying you look fine to me, how about helping the person by cleaning the house, bathing the children, or cooking dinner. Stress is our enemy and rest our friend. Be kind. You never know when your time will come and you need help.

Life is Good for me right now. I know it can change in a heartbeat. The GyroStim is not a cure but a treatment and so I still watch everything I do. I try not to let Stress enter my world. If I can’t, I’ve learned to say No.  Work is not in my vocabulary for now….but maybe the anxiety of worrying about stress will abate one day enough to try to work at least part time or from home.

One last thing that has happened since writing this a few weeks ago, my mom is not well and has entered Hospice and my brother is not well after having several strokes and is now in a nursing facility rehabilitation program.  Stress is not my friend and I will certainly attempt to take things one day at a time.

The website for GyroStim is GyroStim.com

The website for Avora is AvoraHealthcom

 

UPDATE:

It is now April 29, 2018.  Mom passed December 18, 2017 and my brother is a permanent resident at the same nursing facility mom was located for 3 years of her life.  I made it thru the stress and now will proceed with life.  I now go and do a little shopping, ride my bike and do mini walks.  I still avoid stress and the anxiety has reduced but not 100%.  It was only 5 years ago that I was diagnosed after suffering and going to a multitude of physicians for help. Five years ago I was walking with a cane and rocking so hard it was very visible by others.  The GyroStim and Dr. Fox gave me my life back by about 90%.  I still occasionally feel the floating sort of a detached from my body feeling, but no where near where I was just one year ago  May 2, 2018 will be my one year anniversary.  No cane and no one can visibly see when I do have the floating feeling.  If I can not be 100%, 90% is good enough for now.  Hopefully time and neuroplasticity will give me 100%

 

 

 

 

Caring Enough To Share

Life – One minute it’s great. You are planning your dream vacation or things in your life are just so good all you do is thank God daily for all the Blessings he has given you and your family.

Then you take your dream cruise, a flight you booked months ago to paradise, or you did nothing at all. You simply went to bed and woke up to a feeling of rocking, bobbing, swaying, trampoline walking, nausea, can’t think, concentrate, can’t walk, can’t shower and the can’ts go on and on. Now you say, what the hell happened. You still say your prayers and thank God for all his Blessings, but now you are asking Him to heal you.

A day goes by and you think I’ll be better tomorrow. Tomorrow comes and you thinking well one more day, I’ll be fine. A week then a month and now you are getting scared. What do I have. You make an appointment with your doctor who schedules an MRI of the brain and he refers you to an ENT. The MRI is negative and when you describe your symptoms to the ENT he/she says you have Vertigo. Gives you a script and says I’ll see you back in a month. In the mean time these doctors look at you like you have 4 heads. You did not describe Vertigo which is spinning but that must be what you have. You take the pills, return as directed and he/she refers you to neurology.  The Neurpologist says, looking you like you have 4 heads again, lets refer you to psych because you must be crazy. In the mean time you are suffering. Work, family and others are tired of hearing you complain. The doctors who gave you meds that can’t just be stopped, tell you they can’t prescribe to you anymore. They don’t tell you but they now think you are a drug seeker. You look for help going to doctor after doctor but get no help. In the mean time work is getting harder and your employer is becoming more impatient. Your spouse is picking up what he always expected you to do. So now your marriage is strained. Your life begins to fall apart and before you know it 5 years, 10 years have gone by and you begin to think everyone would be better if you were not here.

That’s why I CARE. That’s my story. Many doctors with no answers and then because of Gods amazing Grace you read a story about a man who had a stroke. He was using a GyroStim to help with balance and cognition. I contacted GyroStim and got a listing of locations. I live in NC and the only location in NC was in Asheville.  I called the clinic and received a call back from Dr. Kim Fox a Doctor of Physical Therapy. We talked for nearly 2 hours. She said while she had treated MdDS with vestibular rehabilitation therapy for 10 years, she had never treated anyone in the GyroStim for MdDS.  We discussed the risks and possible benefits and after understanding those, she said she would only do the treatment as a case study. Meaning she would write a paper about the outcome. I was scheduled to go up to Asheville on May 5, 2017. That was the first time since I had found a neurologist who didn’t look at me like I had 4 heads that I had a doctor who throughly understood MdDS. After a week of therapy I was 90% better. Experimental, needing more research, not a cure, this was a treatment that had promise. I returned in July for additional treatment because I wanted that 10% back too. I felt I got it but then realized I had a new problem. I was having a hard time adapting back to life as it was before MdDS.  Slowly. That is the answer. MdDS still lurks in my brain waiting for its opportunity. So I work harder to keep it away knowing it’s looking for its opportunity.

Now I must say my story does vary. I have a loving, kind and very patient husband. I lost my job, lost some friends and gained anxiety and depression. But the GyroStim gave hope and I have to share because I CARE about YOU!!

GyroStim.com

Update on GyroStim Treatment for MdDS

Gosh I really am having a hard time understanding how did this work so well. It’s been 5 months and I’m still in remission. Could this be the future cure for MdDS. I believe so. I keep wanting to shout it from the mountain tops that I’m cured but I know I still watch for triggers and feel it lurking in the background of my brain. So for now until more research is done, we’ll call it a treatment. It’s experimental but seems to be helping others too. Of course there are some with either no change or very little. Sometimes the aha moment comes a few weeks after treatment because the brain is still processing the treatment. If you have MdDS you should contact GyroStim.com.

Melissa Cook and her Journey from MdDS to Remission

Melissa asked me to add she was treated in Asheville, NC by Dr Kim Fox

Contributed by Melissa Cook and published with her permission.

 

I have not been able to post about my recent journey for my balance treatments because it was an emotional one as much as a physical one and I wanted to be able to hike to Pickens Nose to celebrate and today was the day I thought I was ready. The red balloons were the ones I released that represented all the symptoms I have had since 2006. Nausea, Fatigue, Headaches, Dizzy, Panic Attacks, Anxiety, Tilting, Tipping, Vertigo, Swaying, Bouncing and Bobbing. All this because of my brain be very over sensitive to motion. The silver star was released because in treatments I was to look look at a star when the machine I was in stopped. If it was moving then I went another round. 10 rounds turned into 20 rounds which meant 10 days turned into 14. After 20 treatments I was Solid as a Rock which the docs consider Remission. So on this Star I wrote “Solid as a Rock”. And on the other side I wrote that I was Gyrostim patient #7 for MdDS , hence the words on my shirt done by my awesome sis n law Teresa. You will see my happy face and my ugly/happy cry face as I released these balloons. The Lord brought me to this and he brought me thru it. Thanks for all the calls texts and especially prayers for me. And I proudly say God Is Good all the time. Philippians 4:13

 

Life After MdDS

Since writing this, Dr. Fox is currently treating 2 more MdDS making it 6 patients she has treated in the GyroStim. Two achieving remission, one no change, and one is still in treatment and her symptoms are at a lower level.  The two currently being treated are improving and finding their symptoms are being reduced with this treatment.  So now I find it is time to publish this article

In May 2017 I went to the Asheville Balance and Vestibular Center for treatment in the Gyrostim for Mal de Debarquement Syndrome (MdDS). As the first patient being treated in the Gyrostim by Dr Fox, she and I had no idea if things would get better or worse. Well things really got better. Left with only a mild up and down bob, we made a plan for me to return in July for an additional week of treatment. In the interim, patient #2 was treated in the Gyrostim achieving zero symptoms and returning from a 3 hour drive home with continued zero symptoms. This is all so promising for patients with MdDS. But, the 2 of us realized that being normal can be a challenge too. We were sick with MdDS for 10 and 4 years respectively. We both returned home not knowing how to handle a life of normalcy. What would we be able to do without aggravating and reversing what was achieved by Dr Kim Fox and the Gyrostim. How would we live again. Not sure if we could return to the society we excited so long ago.  So now the anxiety of having MdDS has shifted to the anxiety of not having MdDS. The answer may lie in how much support we have in our home and with family and friends. We cannot allow ourselves to be pushed to do things we are not ready to do. If we say no, it’s not because we don’t want to, it’s either because we can’t or we are not ready to venture out to that point yet. Baby steps. We must baby step our way back to normalcy. Ten minutes of a walk, 5 minutes in a grocery store, etc.  It’s now been 3 months for me and I have been able to be in a grocery store for no more than 30-45 minutes. I am riding my 2 wheel bike now up to 6 miles but started by just riding to the end of our road.

Moral of the story is be patient. Normalcy will return in the form of habituation. Don’t push yourself and if you do know your limit. Listen to your body. Rest, rest, rest. Rest is so vital to recovery. Be kind to yourself. Lobby support from your friends and family. You will very quickly learn, if you haven’t already, who are your true friends and loved ones. Those who understand and pray for us daily. Those who don’t and talk behind our backs feeling that we were never sick. Love on the people who loved on us as we struggled daily. Thank them for their compassion and support.  No one gets it until they get it.

http://www.ashevillebalanceandvestibular.com

Gyrostim.com

 

Follow up after GyroStim Therapy May 1 thru May 5, 2017

It’s been about 5 weeks since I returned from seeing Dr. Kim Fox at the Asheville Balance and Vestibular Center in Asheville, NC.  To date I’ve only had one (1) off day.  I spoke to Dr. Fox on that day and told her I was feeling more bouncy, bobbing, etc.  I can say it was a stressful day for a lot of reasons.  Dr. Fox has such a calming voice and reminded me to do my breathing exercises, grounding exercises, head and eye exercises, as well as to rest.  I was on the road with my husband, visiting with my mom and going with her to the doctor.  Mom is 83 and is not in the best of health, so I guess this made my anxiety level tick up.  After finishing with mom and on the way home, I rested and did my breathing exercises.  As soon as we got home, I did my grounding, head and eye exercises.  I also went to bed early that night and my head was not on the pillow 5 seconds and I was out like a light.  I was very fatigued as I did not sleep the night before very well which probably started all of this anxiety.  Dr. Fox reminded me that the Anxiety and Vestibular systems cross each other in the brain, so one affects the other. The next morning and day was so much better.  Back down with my balance to maybe a level 2-3 from a 5 or higher the day before.  I was not emotional and was able to function like the day before had never happened.  Dr. Fox called me the next day to check on me and we talked more about me returning to Asheville for more therapy to see if we can “knock” this MdDS completely to the curb.  I have 2 doctors and a nurse practitioner who are so very supportive.  I know I am blessed to have been given this opportunity with Dr. Fox and have the support of my neurologist and Lindsey Jernigan, NP.  Lindsey is new for me replacing my family doctor.  She told me on my first visit she reviews all her patient charts the night before or the morning of the appointment and quite frankly she had to research me.  I showed her this info on the Gyrostim and she was so very supportative.  Wow, 3 people in the medical field who thought I could be so lucky and blessed.

Now I will be looking at schedules and planning a week or maybe 2 in Asheville to continue this case study for Mal de Debarquement Syndrome and praying for all of us this becomes a viable treatment for MdDS giving all of us HOPE for the future.

This is dedicated to all MdDS and Vestibular Patients (not all vestibular disorders can be treated with the GyroStim).

GyroStim.com

http://www.ashevillebalanceandvestibular.com/

Rockinginthewind.blog

 

GyroStim Project for Treatment of MdDS

At the end of April 2017, I learned about the GyroStim.  The GyroStim is a revolutionary piece of equipment that is being used to treat PTSD, Concussion, TBI, Vertigo, Balance, and Performance (used for athletes).  I learned about this through a beautiful and faithful couple, Jeff and Lisa Morgan.  Jeff is using the GyroStim for cognition and balance after suffering a stroke.  I began investigating this “NASA like” equipment to see if it could help with Mal de Debarquement, MdDS.  After receiving a list of locations with the GyroStim, I found one in Asheville, NC at the Asheville Balance and Vestibular Center.  That day I called and spoke to the receptionist who was unfamiliar with MdDS.  That same evening I received a call from Dr. Kim Fox.  Dr. Fox, very familiar with MdDS, indicated the GyroStim to her knowledge had never been used for treatment of MdDS.  After a robust conversation about my symptoms and if I had been formally diagnosed with MdDS, she let me know we would be in uncharted territory.  She said if I was willing to spend a week and do the GyroStim 5 days, twice a day, she would like to do a case study to see if this was a viable treatment for MdDS.  So, arrangements were made for May 1st thru May 5th, 2017.  I cannot tell you how much this meant to me and the patients of MdDS if this treatment worked or even reduced symptoms to a manageable level.  I can tell you, one must be fearless and trusting to use this equipment, but I can’t begin to tell you after this week of treatment how much better I am.  My side-to-side sway is gone.  My balance is about 90% better proven on a PT evaluation before and after this treatment.  Now I do have homework in the way of grounding and head and eye exercises, but the GyroStim was working to reprogram my brain for spacial orientation, proprioception, and habituation.  There were cognitive elements used such as counting by 2’s, counting backwards, words and word association while in motion in the GyroStim. This improves cognitive skills and multi-tasking.

Assessment: This may be a viable treatment for MdDS, but more studies must be done.  I will be followed up for a few months by Dr. Fox and then she will publish her research.  It may be about me, but it is truly about a treatment for MdDS patients.  I will always be susceptible to having MdDS.  I will travel with caution.  Boats are definitely not recommended as an option for travel, so probably no cruising in my future.  When on a long car trip of more than 1.5 – 2 hours in duration, I should stop to “ground” myself and break up the motion of the car.  When flying or on a train, I should be medicated with an antihistamine or Valium to suppress my vestibular system.  With the GyroStim treatment, at this time I have regained my life with my family and friends for the first time in approximately 10 years.  This to me is Priceless.

The Asheville Balance and Vestibular Center is located at 1000 Centre Park Drive, Asheville, NC.  I must mention the Technician for the GyroStim whose name is Jordan as well as the Physical Therapist, Brittany who are both wonderful, caring and along with Dr. Fox allowed me to cry tears of happiness each day of the treatment.  Dr. Kim Fox has the most caring heart of anyone who deals with MdDS that I’ve ever met (maybe except my neurologist who is also very supportive and caring).  You can google the GyroStim and look at a video.  By the way, to Dr. Fox’s knowledge, her center is the only center who specializes in Vestibular and balance issues, not just balance.  Also since not FDA approved, this is not covered by insurance, but Dr. Fox’s packages for this therapy are extremely reasonable for this equipment which is very expensive.

 

May 16, 2017 Update:  I spoke with Dr. Fox today for follow-up.  I am doing well.  I am a bit more active and am doing my grounding, eye and head exercises as prescribed.  I still have a bit of a bob.  She is working with the engineers to tweak the protocols for the equipment as to try to help with this up and down motion.  So after I speak with her again in 2 weeks, I may be heading back to take more treatments.  Please remember this is a case study and research.  We are in uncharted territory.  I am very happy to be a part of this study.  Anything for a cure for MdDS.

http://www.ashevillebalanceandvestibular.com/

Dr. Timothy Hain – Neuro-Otologist

On May 12, 2014 I had the privilege of being able to see Dr. Timothy Hain.  I had testing with Dr. Hain on May 12 and I then returned on May 13, 2014 to see Dr. Hain. Dr. Hain is a neuro-otologist who is well versed and has written many articles on MdDS. He is a very good physician with an exceptional bedside manner.  He gave me a firm diagnosis of Mal de Debarquement Syndrome. Up until then I had been told I had Central Vestibular Disorder. MdDS is more definitive within the category of Central Vestibular Disorder.  MdDS is a diagnosis by elimination. All testing is usually normal with no structural problems with the brain. The only test that was abnormal was my VNG which showed this disorder is central brain. I asked Dr. Hain many questions such as why I had lost the ability to organize and multi-task. His response was my brain was multi-tasking every second of every minute of every day and it just doesn’t have the capacity to do much more. The eyes and the brain are working very hard to balance my body. That explains why my eyes hurt so bad by the end of the day. It also explains why I have to take multiple breaks on computers.

Fatigue is a huge factor in this disorder. Dr. Hain explained that it was because of the brain again working hard to balance. I guess the brain even works at night because I can sleep all night and wake up exhausted. I listen to my body and take naps as needed.

This was Dr. Hain’s explanation regarding how most people get MdDS (not all). When one steps on a cruise ship they will feel motion of the boat. The ankles begin the adjustment process and ther brain is mapping the motion. When complete you are able to go and enjoy the cruise. When one steps off the boat, the ankles begin adjusting to land and the brain begins mapping the change for dry land. In theory, the brain will return to normal brain mapping for land. Some people don’t read adjust and the motion of the boat may be permanent. Sometimes one can go into remission but it may return. Mine is 6 years now and so far no hope of changing.

Now please understand people also get this with plane or train travel. Driving a car makes the rocking subside, but returns with each stop light or when you get to your destination. Also some people get this spontaneously. Mine began with cruise travel. I had 2 remissions and then out of the blue after neck surgery, it returned. There are only 2 or 3 doctors researching this disorder so awareness is essential.

June is MdDS Awareness Month. If you don’t have spinning vertigo, and you feel like you are on a boat with rocking, bobbing and swaying, you may have MdDS. The earlier diagnosed, Physical Therapy may help or may not. But if meds are began early, some patients have a greater chance of remission. But be aware it may return out of the blue or if you choose to go back on a cruise, plane or train. Talk to your doctor but go armed with literature from the Foundation or web site search. Most doctors will look at you as if you are crazy as most have never heard of MdDS.  The Foundation’s web address is: http://www.MdDSFoundation.org. There is a lot of good information, but don’t be afraid to try whatever may work.

From Childrens Lips – Vestibular Disorders

I have added a Video Link for all Videos.  I am posting a video regarding Vestibular Disorders. This video is in very simplistic terms as it is from children’s lips.  It is about Vestibular Disorders in Children, but is very applicable in Adults too. The name of the video is Brain Highways.  It is very interesting in that it may explain some disorders in children that go undiagnosed or misdiagnosed. The video is about 5 minutes and is well worth listening to especially if you have a child with overactive tendencies or even under active tendencies.  It is very worth we adults listening to as well.  As one with a Vestibular Disorder, this gave me a very simple explanation of why I “Rock”.

This past week was a little challenging.  We had storms to come through our area which always makes the symptoms intensify.  My body tends to react with the barometric pressure.  The rock worsens, the tinnitus can be extreme, and my head pressure increases.  We were very fortunate in that none of our storms were severe.  But as many of you know other areas were not so fortunate.  I wish to take a moment and ask that we all remember those towns and communities in our Prayers.  There were many lives lost in these storms and we Pray for those families as they lay their loved ones to rest and try to find answers in their grief.  God knows why and hopefully those families will turn to Him for comfort.

Thank you for taking your time to read this Blog and I hope you take the little amount of time and view this video.

More later ……………………..

2008 Not 2009

I realized I’ve actually had this disorder since July 2008. I did a vestibular rehab in 2008 or early 2009 after complaining of being dizzy and unbalanced to a doctor at that time. I had surgery in both July 2008 and July 2009. July 2008 was on my neck, 2009 was surgery was on my lower back.

In January 2008 I was hospitalized for MRSA and had to have IV antibiotics. I am just now learning that Vancamycin is Ototoxic and can destroy the Vestibular system. Lots of questions to be answered.