Still Living life 7 years after MAV

Hi guys, my success story is still posted, just wanted to follow up and say that I am still living life to the fullest every day, still taking my 50mg of Topamax every day, and living 95% symptom free. I was never at 100%. If you read my story, I was soooo bad, I ended up having one permanent symptom but I want everyone to know, that symptom does not stop me from doing ANYTHING. I play in a competitive adult volleyball league 3 nights a week, i own my own business building and operating two haunted attractions in the New Jersey area, and I am not held back by anything. I do what I want to do. Sure, I wake up on the ocassional day and might need to put on a pair of sunglasses if I was out late the night before but who doesn’t? ;-). The next day, I am fine again. I don’t abuse myself, I am still mindful of what I have, but I am not a slave to it. I look around here now and I really don’t recognize any of the board members. That tells me that people are getting better and moving on, and I like to see that. I expect to see that.

So, anyway, I just wanted to stop in and re-assure everyone that life is waiting, but part of the healing process, I found, is to get right back into life as soon as possible, even while suffering with all of these symptoms. Sitting around with fear, anxiety, worry, staring at computer screens for hours a day, etc, just makes the condition worse. I found that out the hard way. I started out very bad from the beginning, but made myself FAR worse by embracing anxiety, fear and worry. Once I let it go, the medication could do its job easier and quicker, and within 4 months of starting on it, I had my first good day. The rest was history.

Happy healing



Hi Rich

Thanks for writing back and happy that u r still doing well. Your description of symptoms sounded exactly like mine which made me try topamax. It took me 3 attempts to get on this stupid drug cz it was so hard to tolerate it the first two times. Eventually I made it. It was your emails to me that I kept repeating to myself everytime I felt screwed up and those emails inspired me to keep going. today i am 200mg and doing 90% ON AVERAGE. i have been left with the same persistent visual crap that u have which the good news the specialists oit there have found out where the problem lies in our brain. have a look at the link on my previous post on visual snow or persistent migraine aura. i think they shud come up with a cure inn the next decade for this visual crap. take care mate

Rich - great to hear the good news, thanks for checking in.

Yes, I’m also out there living life 5 years after MAV knocked me off my feet for almost a year. Yes, I eased back into work once a new neurologist prescribed a few meds that were (FINALLY) helping. More tweaking of medication over months/years and I was living life to the fullest. I’m trying to say that there’s a point when you can go out and fight through the symptoms and there’s a point when you’re truly stuck on the couch. Keeping fighting, experimenting and push yourself to see what you can do - but not too much too fast.

What a lovely post Rich - thanks so much for giving hope to all of us that are climbing the ladder back to normalcy xx

Rich I know this was written awhile ago but this is such a great and inspiring story. I have just started my MAV journey back in September 2016 after suffering a concussion and I was not diagnosed until the end of January 2017. Those 5 months were a living a hell as we all know they can be. I started Topamax as well and after 2 months I have seen a lot of improvement. I am back to about 70% and just managing to work full-time again and take care of my 9 month old daughter, but I keep coming back to your story for inspiration that someday i’ll be able to run again, exercise and live life to the fullest. It was actually your originally story on previous post that helped me get to my diagnoses. I really just want to thank you and I am so happy you are doing well and I hope one day I’ll be able to say the same about myself. Thank you for the inspiration. You have no idea how much these stories help us!