Hi. I’ve had MAV on a off now for 7 years. I had it really bad for the first 2 years until I got diagnosed by Dr Surenthiran who put me on Nortriptyline. I eventually got up to 70mgs and was symptom free for years. October 2019 my GP noticed that Nortriptyline was affecting my heart and wanted me to come off it so I went down to 20mgs and stayed there with no MAV issues or heart issues. March 2020 my MAV symptoms returned after covid so I went back up to 40mgs with candesartan too. Now I’m back down to 10mgs Nortriptyline and need to come off it. My dad has young persons dementia and as there is a possible link between Nortriptyline and dementia I can’t continue on it. My symptoms are Back again now. I’m lightheaded and dizzy a lot, derealisation, my vision is off and I can’t focus my eyes properly, I feel like I’m looking through a layer of film and everything seems so bright. so tired and fed up!! What medications have worked well for you? What are my options?
Have any of yous got a opinion on the study between Nortriptyline and dementia? Nortriptyline has worked so well for me I’m gutted I’m coming off it.
Hope your all well x