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.
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 ……………………..
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.
Once in a while I have a good day, but most are very difficult. This week has been very difficult, but I continue to try to push through no matter. Upon getting up in the mornings I go ahead and make the bed, otherwise it might not get done. Just making the bed may sound easy to most, but to those of us with balance disorders it is not. The reason is your movement is from one side of the bed to the other which is sort of like being on a Merry-Go-Round for us. After the bed is made, we have to sit and rest to settle the movement which for me is like being on a boat, bobbing, sway and rocking. After some rest, I then tackle picking up clothes and/or dishes. To most that seems awfully simple. Aha, not to those of us with balance issues. Moving up and down again mimics the boat movement and gets the movement going again. It is really not the in motion that bothers me, but the stopping of the movement that is most bothersome. Standing is the worst so I sit until I can move again. As you can imagine the reason movement does not bother me is because I can move with the boat movement.
The simplest of tasks are so difficult. I’ve often wondered if I will ever work again. I’ve thought if only I could just babysit a newborn, as I would not have to chase them around. But, I think of the safety of the child first. If I am holding the child and fall, I would be crushed if I hurt someones child. I have thought since I love to drive as the symptoms do go away while driving, that I could deliver papers. But I could not get through an interview because I rock so very badly until I actually get in the car and drive. Come to a stop light, I am back to bobbing, swaying and rocking again.
So the moral of this story is do not take the simple things of life for granted. I pray every day for a cure and to do those simple things again.
I have added 2 videos. One is an airing of ABC’s Mystery Diagnosis that is great for explaining the disorder and another that is a very talented young lady, Hayley, who took liberties with the song “Rock the Boat” to remix it for MdDS. She has a beautiful voice and I think you will enjoy it very much.
This may be my last post for a day or two. I expended a lot of energy trying to get this blog up and running. But I have some funny and informational ideas ahead so stay tune.
Quite a discussion on FB yesterday regarding our short-term memories. My question is could this be linked to some degree with Alzheimer’s. Maybe but that would not explain the imbalance. I can be talking and in mid-sentence will forget what the words are as well as an entire thought. This is very frustrating and can be embarrassing as well. The research shows it is not that I am “crazy”, but because Vestibular Disorders do have a symptom of short-term memory loss. So when I think it’s Alzheimer’s, it’s probably not. It is this wonderful disorder called Mal de Debarquement Syndrome or also known as a Vestibular Disorder that I have been blessed to endure.
I thought I could write weekly regarding my Vestibular Disorder but I found it really became quite the challenge. I was diagnosed in 2011 with Central Vestibular Disorder even though I have had this disorder since 2009. Now it’s been nearly 6 years and I’m still rocking, bobbing and swaying. It has been very difficult with my short-term memory, cognitive functions and daily living with this disorder. Imagine trying to navigate on a trampoline every day of your life. You worry constantly about falling, more for the fear of getting hurt than the embarrassment of the fall. I have problems with going to grocery stores because of the isles. I don’t like crowds and loud noises. They are all triggers to make the symptoms worse. I use spell check to assist in spelling correctly the words I want to say. Math is very difficult for me now. I went to school for accounting and was a Medical Practice Manager for over 20 years. Now I am a homebody and go out only when really necessary. I do love to drive. Driving makes all of the symptoms disappear. But when I have to come to a stop, my head begins to bob and sway.
They say I may have Mal de Debarquement Syndrome, but there is no cure. I refuse to accept that and will work to beat this Syndrome if at all possible.
Doctors need to be educated that we are not crazy. We do want our lives back and this is REAL. Look at how long it took me to get to a diagnosis. Before 2011, I had been to a neurologist at Duke University Medical School, a psychiatrist and an ENT. None of them could diagnose me. It took another ENT willing to listen, a neurologist who BELIEVES ME and a great family support system to get me to where I am today. Admittedly, it’s not much better but knowing the diagnosis is half the battle.
This is the beginning of my personal blog in which I will try to share the disorder for which I was chosen to endure. I was diagnosed in 2011 with Central Vestibular Disorder? But, this year discovered the more correct diagnoses may be Mal de Debarquement Syndrome. For those of us who have MdDS, life is forever changed. We rock, some more than others, and we tire with very little effort. Our days are filled with what ifs and making plans we may or may not accomplish. Getting out of bed can be an accomplishment. Getting a shower, making the bed and getting breakfast can wear us out to the point of needing to go back to bed. Symptoms include: Difficulty with balance, fatigue, inability to concentrate, comprehension, headaches, anxiety, intolerance to busy patterns, nausea, light sensitivity and many others
This is day one. More to come as this is all I can accomplish for today.