Long time reader but not much of a poster. I just wanted to share a positive story. Happy to answer any specific questions if I don’t touch on them… I’ll try to keep this post as short as I can!
I had my first episode of MAV on April 2016. It was after a night out with my girlfriend in Lake Tahoe (elevation) and I’ve never felt so scared and awful in my life. I continued to feel awful and suffer severe attacks for the next 8 months. Day to day I was constantly nauseous, felt like I was on a boat, hard to drive and many times where I could not drive or be a passenger, TV would make me sick at the peak of my attacks. The one thing that I have noticed is my symptoms have changed over time.
I was diagnosed with Vertigo at the ER during my first visit and then vestibular neuritis, but something still felt wrong. After some research on MAV (this website particularly!) and relating to so many symptoms, a friend helped me set up an appointment at Cedars Sinai (Los Angeles)with a nuerologist with many MAV patients. The most discouraging part of the appointment was her brutal honesty that the condition is VERY hard to treat. Every patient is different. After some trial and error, I was on 100mg of Nortrityline and 240mg of verapamil. I have been able to reduce my Nort to 80mg and verapamil has stayed the same. I am now 95%, if not 100% most days. I did notice as I got better, symptoms were brought on from anxiety. How could you not be anxious in situations you experienced before that were absolutely awful? For me, it was anything that had to do with travel. I am facing those fears and coming out the other side and finally enjoying life again!! I just want you all to feel like you have hope. I never felt more low and hopeless in my life than I did for over a year and a half… I couldn’t care for my daughter or even myself at times. This awful feeling will not last forever!