Really not sure why am I writing this and what I am looking for but thought I should start somewhere. And you seem like a friendly bunch!
I first starting to display MAV symptoms in 2013, I believe it was brought on by work stress (I run my own business with my partner). Like many of you, I have had a long and rocky path to get to the point of diagnosis. The first significant MAV patch was in 2014 which led to severe insomnia and anxiety. I believe with the aid of Sodium Valproate (always difficult to know what really helped) things improved so I was able to go back to work although I don’t think I ever got beyond 80% - I had to give up dancing and drinking alcohol. The following year it came back and got steadily worse until again I had to give up working - the lights in the office, working on computer screens and just being able to think straight (and sometimes talk straight!) became too much. So essentially I have spent the last 18 months pretty much housebound. I tried sodium valproate but very recently weaned off after a year of taking as it did not seem to help this time around. Have also tried Propanalol (doc asked me to come off after I had chest pains), Amitriptyline, nerve blocks, 1 round of botox, Vit B2 & Magnesium all without luck. I follow the migraine diet as best as possible. The only thing which might have helped ever so slightly is Venlafaxine which I am still on (150mg), although I think this could just be because it has improved my anxiety not the actual dizziness/aversion to light/sounds/smells, strange vision, neck pain etc etc.
3 weeks ago I started Nortriptyline 10mg and had really been hoping this would be the one! I had heard lots of success stories so was keeping everything crossed that it would help me too. Sadly three weeks in I feel worse still. I keep telling myself its early days but wanted to see if anyone had felt significantly worse after starting Nortriptyline?
Luckily I have a follow-up appointment with dr s next week so sure he will have an opinion but even struggling to keep up the med trial until then.
Also writing this on the computer is such a challenge, I’m impressed with how many of yu have managed.