Hi there! : ) I don’t really post on here too much. I did when I first was diagnosed with MAV but I still read the threads once a month or so. MAV started for me in the first week of March 2019. It was a terrifying experience to the point that I’d never thought I would live a normal life again, work, drive, leave my house etc.
I took a prednisone taper paired with a very lose dose of Valium and also tried out my migraine meds which are a Indomethacin for a very short period of time. I totally stopped those within a couple of weeks and my neurologist said come back in two months, if you’re not getting better let’s talk, Ami, Nort and Amovig.
In that time period between appointments my husband and I decided to switch my focus a bit. Eat more gluten free, workout a lot, drink a ton of water, use CBT therapy, see a therapist and use hypnosis. I shocked my doctor when I went back, I was already 50% reduced in symptoms.
From June (that appointment) to now I’m about 80% better. I’ve seen my neuro since, I’m fact I have an appointment coming up in two weeks. I am driving again, going to stores (most with my hubby, depends on the lights), I’m working full time, spent all last week in Miami for my staff meeting and company holiday party which means I flew! Flying was something I was dreading and thought would never happen again. It ended up being a fantastic experience.
MAV took over my soul, sank me into a mode of constant panic and depression. I know I’m a rarity here and for most meds are key. There were many days I’d say screw this give me Ami, this is hard! I’m not sure if I’ll fully recover, if I’ll return back to full blown symptoms, if I’ll need meds at some point.
My life changed and it changed me as a person for the better. I know how hard it is to have an illness no one can see that seems impossible to describe and people don’t understand. If you step off meds and see no progress, take the meds. It’s worth having better days.