Young with MAV

Im kind of new here, and was wondering if there is anyone who is in their teens/20s that uses a cane or any mobility devices with MAV?. Ive never met anyone with the same affliction or many young people who use a cane.

I am in my 20s!

Oh thats rad, Haha i was starting to think I was alone. Have you had mav for a long time or had to use any mobility devices because of it?

Mine started about a year ago. I used to ride pro amature motocross, all kinds of fun things. Not anymore. I don’t use a cane or anything. Just started to try meds recently as I was anti med for a long time

I’m 30. I got it when I was 27 though. The walking has gotten a lot better. Time heals a bit but also the supplements and medicines have helped too. I am able to horseback ride now. :slight_smile:

I posted about that a bunch. I hope you feel better soon. This illness has given me things and taken things away…but on balance I learned a lot more with the illness.

As a young person with it, I think that i have to remember that ome people get cancer and die super fast, and this problem forces you to take care of your health in other ways. I’m more empathetic and open as a person too. I care less about what people think.

Well put. I feel the same.

Thats cool ! And haha im the same medication side effects scare me but what are you going to do?

Cool what meds & supplements do you take? Im kind of the same with the time healing hut im starting to feel like its getting worse in certain areas.& thats true.

I just started taking nortriptyline and verapamil.

Ive never heard of those, do they work for you?

They are super common. Not sure yet, just started.

What about you, what are you taking ?

Topamax. Is your mav constant? Or do you just have attacks?

Constant. Maybe 5 good days a month. I also get facial numbness.

What do you mean by 5 good days? & ah im the same. I get like hanger migraines too.

I’m 24 I e had it for a little under a year

Constant rocking swaying feeling not as bad as day one but not 100 % yet. On 100mg of Topamax and 240mg of verapamil

Ahh i see, have you had to use any mobility devices because of it?

Nope just had to really man up and hang in there and deal with it every day. It was to the point where it felt like the floor was bouncing up. With every step. But I drive, exercise all the time. Just deal with it and hope for the best. Hopefully next doctors visit I can get up to 360mg of verapamil. Before all this. I was extremely fit now I just workout to maintain my health lol and get rid of this.

It took about 4-5months to get any affect with meds. Just hang in there and stay positive.

You dont get migraines or nausea when you exercise? I can only walk around for exercise. & I am positive, ive had it for like 5 or so years but i never met anyone who had the same thing. Usually if i did it wouldnt be nearly as severe so i came here.