Hi, I am writing this to give hope to others that are ill with MAV. I used to post occasionally on here but I became so overwhelmed with having MAV that I became depressed and withdrew from others. I felt so ill and hopeless that I honestly felt like there was no chance at a normal life.
I suddenly developed MAV in May 2010 and it was debilitating and nonstop. Daily (all day) I suffered with: severe dizziness (so severe that often I could only walk a few feet then rest) made worse by patterns, crowds, shiny floors, and fluorescent lights; when standing I felt like I was dropping into the ground; the ground constantly felt like it was bouncing; I rocked back and forth. I also had numerous other symptoms. I had a job in research so I could not take time off work. My symptoms were being managed by a GP until I could see a neurologist – I live in Canada and the wait list is long for a specialist.
After failed drug trials (Nori and Ami and three attempts at Topamax) my GP finally put me on Depakote and I immediately felt an improvement. I reached 750mg and while my functioning was better I never felt completely normal. I also gained a huge amount of weight. When I finally got to see a neurologist we discussed the treatment options and given that I responded well to an anticonvulsant (Depakote) we decided to try Topamax again.
My neurologist works at a large migraine research centre here in Canada. He explained to me that Topamax is a very difficult drug for many people to initially take, and to expect to feel ill at first. If a person’s primary symptom is dizziness, this can be exacerbated for some time. Further, he said that Topamax works very slowly, and the positive benefits may not be seen for as long as three months or more. With each titration upwards, the side effects can appear again, but they may lessen. My neurologist said that many patients abandon Topamax long before any benefits are seen.
I have been on Topamax for nearly 2 years. The titration to 100 mg was very challenging but I took my time (6 months). Having a supportive neurologist made all the difference. I was very dizzy getting to 75mg but after that things seemed to calm down. I eventually had to titrate to 200 mg to get full relief of MAV.
Currently I am still on 200 mg of Topamax. I really don’t think much about MAV anymore. I am living the life that I used to live prior to May 2010 when I got MAV. I still get the occasional migraine (but with no dizziness) that is weather related but all the other MAV symptoms are gone. For all of you with MAV please remember that you **will **get better with the proper medication trial