Just sharing information if it helps anybody else. Met a wonderful consultant today who belongs to one of my sisters. She is being investigated for Hugh's Syndrome. I have had a number of small stroke's all leaving some damage and blamed on my PAF, my latest one was while my INR was on 2.7 which by all accounts should be impossible. My daughters have suffered stroke like symptoms too. The consultant took a family history of us all as well as my sisters current symptoms and he thinks he knows what it is. He thinks we all have some sort of faulty blood vessel behind the right ear which is stopping blood to our brain causing the left sided symptoms, but causing damage to the right ear. He thinks somebody in the USA is studying this and is going to get back to us with a name and an appropriate drug that will stop these spasms from happening . Luckily they are only causing temporary damage to my sister and daughters, he does think its hereditary and is excited at finding a solution. It would also explain why the drugs for my balance issue's are not working either. Fingers crossed he finds something.
Wishing you all a happy weekend xx