My name is Ana Cymerman and I was a CVS sufferer from age 5 until age 32 (now I am 34). I was born in Barcelona, Spain and had CVS episodes every 3 to 4 months that always started at night, as I was asleep and lasted 3 to 4 days each. Episodes would come anywhere I was…it could be at home, on a holiday, or a business trip…there was no specific time of the month, diet, or location that made a difference in the start of each episode. As soon as it would start, I would vomit every half hour for 1 or 2 nights and then would suffer from intense nausea and exhaustion for about 1 week each time. Any fast movement or sunlight would cause extreme vertigo which would completely paralyze me for a few minutes (and sometimes even for a few hours). As such, I would regularly miss school and then my work duties as I became an adult. My colleagues and peers became used to suddenly see me walking with my eyes closed and touching the walls in order to get where I wanted and then sit until I would recover from my vertigo.
I went through all sorts of countless treatments in Portugal, Spain, Israel and the USA to find a diagnosis and treatment, but the cause of vomiting could not be determined and no suitable treatment was found for 27 years. All tests were ALWAYS NEGATIVE and my doctors seemed to start questioning the reality of my symptoms, as if it were not possible to have everything “fine” and still be able to vomit so much without any lasting and permanent physical consequence. As an adult, I was often told that my episodes were probably due to stress and were a cause of a strange “psychological disorder” but I never believed in this. I went to the hospital many times my entire life in order to find new treatments but nothing seems to provide any relief.
A few times that I felt my vomiting episodes were about to start as I was lying in bed at night suddenly extremely sweaty and dizzy, I would make an almost inhuman effort to get up as I was so nauseous and somehow that would delay the onset of the vomiting. Nonetheless, that strategy would only delay my vomiting cycle by one night so before each time I would do this, I would know that the following night was going to be untenable and would plan accordingly to cancel anything I had to do that week. That “success” in delaying the episode by one night would often cause suspicion among my colleagues or supervisors, as they seemed very surprised by my ability to know in advance that I was going to be so sick.
The most touching moment of my life with regards to CVS was in 2012 when I watched the Grey’s Anatomy episode with Chandra Wilson. She gave me renewed hope and energy to look for new treatments. After watching her talk about her life story with her daughter, I cried deeply and reached out to new doctors recommended by CVA Online. I was diagnosed formally with CVS a few months later at John Hopkins hospital by my neurologist, Dr. David Zee who tested me extensively and tried a few treatments but none of them worked. I tried an anti-depressant that Dr. Zee recommended for about 7 months but nothing improved during that time, apart from for great weight gain despite my regular exercise and having been fit since I was little.
Finally, and practically miraculously I found the remedy that seems to have completely cured my CVS. It was an AED that my family doctor, Dr. Michael Trahos in Virginia recommended as a last resource because of my desperation: KEPPRA XR. I have been taking 500mg/day for the last 2 years and never got sick again. In parallel, I have also been taking Co-Q as I have high cholesterol and my cardiologist recommended it to counter the effects of Pravastatin.
I would be happy to share my story in more detail to help other CVS patients and their families, as my life has changed dramatically since I started taking Keppra. I couldn’t be more thankful and hope to help other CVS patients too.
You can contact Ana at firstname.lastname@example.org