Hello everyone
This has been a tough week for me.  I have been experiencing some dizziness as a result of my disease.  I feel light headed and headaches at time.  (pressure headaches)  Can anyone relate?

Alice,
Don't know your history, but it's probably not something you can/should ignore.  It's time to see your neurologist.  Sure wish there was more info on this MM disease - for us and for the doctors as well.
Best,
Roni

Hi Alice,  first you might want to look into your medication.  We're probably all taking similar meds and if you look into them you'll see that dizziness is the main side effect of almost all of them.
    Also dizziness and light headedness are primary symptoms of anxiety and depression and believe me moya moya is very good at bringing those 2 beauties into our lives.  Yes I can relate, dont worry but do mention it to your doc.  Good luck.  Tom G.

Hi Alice

My daughter Louise often felt dizziness before her surgery 1 year ago, and a few times during the first three months after surgery. She could not dance, turn and move her head fast without getting very dizzy and sometimes she even fell. I think it must have been like being drunk or something. To make it go away she would have to rest for a while. And probably because of that she has always moved carefully and slowly, not like "normal kids. Now I finally understand why and I assume she has had MM for a long time, even before she could talk, perhaps all of her life.
Today she doesnt have that problem at all and also her way of moving,dancing  running and so on is perfectly normal. In my thoughts I every day thank the few fantastic doctors around the world who know something about this rare disease and especially her surgeon Bengt Gustavsson who without any experience of MM very quickly diagnosed her, found out what treatment she needed and had it done within four months after we first went to see a doctor about her TIA. I also thank DJ who set up this website for us to talk to each other around the world.
Take care.

Annica :)

Louise is a very lucky girl.  I'm happy that her surgery was successful.  I wasn't so lucky.  How old is she?
Alice

HI MY NAME IS KATHY AND I ALSO GET VERY DIZZY WITH MY MOYAMOYA DISEASE.  I FIND THAT ALOT OF TIMES IT IS WHEN I AM BENDING OR STOOPING AND GETTING BACK UP.  LIKE SOMETHING IS CUTTING THE CIRCULATION OFF.  MY HUSBAND TELLS ME IT IS MY MEDICINES AND I SAY YES COULD BE BUT ALSO COULD BE AN ARTERY THAT IS USED TO GO TO THE BRAIN.  LIKE WHEN THEY DO THE CEREBRAL ANGIO- GRAM ON YOU.
MAKES ME WONDER.
KATHY

Normal healthy people experience the same but not to the same extent. Obviously abnormal blood flow in MM patients has to do with the symptom.