I am a 37 year old female, living in Florida. 2006 was the first time I experienced this feeling of what I called “dizziness.” At the time, I was working at a job where my stress levels were very high. I remember having these symptoms for about a week and actually had plans on going on vacation that week (specifically on a cruise). I remember thinking, “How am I gonna go on a cruise already feeling dizzy?” Lo and behold I noticed my symptoms went away right before the cruise. With that I convinced myself that these symptoms were all stress related.
A few months after, I left that job to go to Nursing School. I never had the symptoms again until I completed nursing school and was getting ready to take my boards. I remember thinking, “Oh boy the stress is causing this dizziness/vertigo.” I called it vertigo because my mother had been diagnosed with vertigo and that’s what she diagnosed me with :). I remember having a difficult time studying online and feeling like I couldn’t focus. The symptoms went away a few days after I took my boards exam and I found out I had passed, which again lead me to believe my symptoms were stress related. Thereafter there were a few times where these symptoms occurred for 1-2 weeks at a time.
On one occasion I was having bad headaches/migraines along with the “dizzy” symptoms, and I was out of work for 3 weeks. When I returned to work, Employee Health recommended that I see an ENT/Balance specialist for my “dizziness/vertigo” symptoms. Several balance tests were performed (during a time which I did not have any symptoms). The only conclusion that my ENT could find is that I possibly I have inner ear damage (never had any ear problems or trauma in my life). He prescribed clonazepam, which I have taken off and on since 2009. Even with the medication, I still have the rocking, swaying symptoms especially after taking cruises or flights. It has lasted up to 5-6 weeks at a time, then becomes very mild. My MD suggested I increase my dosage. My fear is the use of a benzodiazepine for the rest of my life. I have tried to research alternative medicine but all point to assisting with the “symptoms of nausea, vomiting, dizziness.”
In doing my research, I heard of MdDS and was sure that this was my diagnosis but my ENT never confirmed. My neurologist who treats me for my headaches and migraines (and who is aware of MdDS) agrees that my symptoms are similar to those of MdDS. I have symptoms of rocking, swaying, feeling anxious (tachycardia), difficulties concentrating, and even clumsiness.
Listening to an interview that was done in July with Cathy H. has shed so much light and even tears. I, too, know what its like to have people look at you as though “you look perfectly fine” but inside it’s a nightmare. I hear people say, “How can you have vertigo and drive?” Well, it all makes sense now!
As a RN this is a very debilitating sickness to deal with. I find myself coming home from work and dropping to the ground with so much exhaustion and just crying my eyeballs out. Oh and not to mention the thought of wanting to quickly fall asleep to take me out of my agony.
Thanks for allowing me to share my story. Being the patient and a RN, I plan on spreading the word and advocating, getting involved in what ever way possible.
If you haven’t been diagnosed with MdDS yet, avoid using the word “dizzy” when visiting your doctor. Instead, tell them that you feel like you’re on a boat, walking on a trampoline or mattress, gravitational pull… or whatever motion sensation you are experiencing.