@gidlabu Within reason you can push yourself and exercise. Listen to your body. @flutters has been my inspiration to drag my a$$ to the gym when i feel around 80% I have actually found exercising has helped MAV and my overall well being in general. Forgot to mention you sleep like a log too.
I do crank out lots of miles and hills on my bike. The trick is dancing along the edge of your threshold. Don’t go flying over. Slow down when MAV finds you. Don’t let yourself get more than marginally more dizzy. When I get dizzy and nauseous, I change gears, slow down and take my time. When I’ve recovered, I hit it again. Exercise has been a saving grace for me. Always at first, it sucks. No matter what, those first 20 minutes just suck. But, if I gut it out, it’s always better for me at the end.
Great to hear another MAVer improving however slowly. That will be give others on here increased hope.
You are very lucky he does ‘manage’ his MAV patients. Most UK neurologisfs I’ve found only give one off diagnosis appts then show you the door. NHS or private makes no difference in that respect. I’m DIY all through. Still the internet is a godsend.
Very interesting that. Also read on this forum where Dr S condemned alot of VRT exercises one MAVer was given to do as well.
From exp I think it’s the timing of when you return to exercise that’s crucial. Haven’t worked out a formula for it though. No idea. Obviously there’s also habituation to take into account. What you have always done counts a lot. Guess that’s why walking is recomended and, sometimes, comes easier, we all do that all the time - well, as long as we have balance to stand that is!
Firstly thank you so much for replying and taking the time to hear others go through this and get better honestly makes me have hope and also like I’m not losing my absolute mind !!!
I am soooo happy to hear ur at 80% could I ask what symptoms still remain? It’s so hard to describe these symptoms to someone that unless you’ve been through it you jsut probably wouldn’t get it .
Hope it’s ok to ask a few questions
How long did it take to see a change on meds ? Did you have to get to a high enough dose ? Currently at 40mg of nort and only noticed slight improvement if that. Also did you ever get the spaced out feeling and almost like ur eyes couldn’t take everything in? When I’m outside or when I walk around it’s like my eyes don’t keep up or take anything in ? If that makes sense ? I saw you said you had the heat rippling affect ? Please tell me this goes
As for exercise dr s said I could still do it as I’m a trainer so I have trained most days I consider it my vrt but I can’t push like I used to . Also if I’ve done a lot in the day I make sure to rest I know when I’ve had enough only thing I can’t do is run or jump. Weight training is ok assuming because it’s not too much moving around . As for your bike that’s prob a lot for your brain to catch up with ! Did you ever find driving hard ? For me it feels like I’m in a computer game so I don’t drive far atm
Sorry for the overload of questions but thank you so much for writing to me it gives me hope this last 9 months has dragged me to the darkest of places and that’s so unlike me I wasn’t meant to move to America end of the year and can’t even imagine getting on a plane right now !
Thanks again amy