headaches and tiredness

[cjb48]

Where can I learn more about Cadasil? I've just been told that I have Cadasil after all the test that I have been put through these last 5 months. First my doctor thought it was MS, but after all the test came back, It's been concluded that I have Cadasil. I want to learn more about it. What to expect, where I stand  and so on. Can you please steer me in the right direction.

[snoepeke00]

hi,
I have cadasil too. I know this already for  5 years. I have it from my dad, who died about 3 year ago.
I am 39 and have 3 kids.. if you like to have a chat please contact me on this adress
***@****
greetings from belgium

[SARAHDIAMOND]

HI, IAM 33YRS OLD AND 5YRS AGO I WAS DIAGNOISED WITH MS, I HAVE NOW THIS YEAR BEEN TOLD I HAVE CADASIL, MY MUM ALSO HAS IT AS SHE LOST HER SMELL AND TASTE LAST YR, SHE ALSO HAS BAD HEADACHES ON THE RIGHT SIDE, I DO TO IT FEELS LIKE SOMEONE IS SQUASHING MY HEAD, MY YOUNGER SISTER ALSO HAS CADASIL WE FOUND OUT JAN THIS YR, I HAVE HAD MY HEART MONITORED LAST WEEK AS THEY THINK THE CADASIL IS AFFECTING IT. I ALSO WAS TOLD I AM HAVING STROKES ALREADY AS IT SHOWED UP ON MY MRI. I AM SCARED I DONT NO ANYTHING ABOUT CADASIL AND NEED TO ASK QUESTIONS, MY NUERO DR WONT ANSWER ANYTHING I ASK HIM. I HAVE NOW LOST MY SMELL AND TASTE I ALSO GET LIKE A RUSH FEELING GOING DOWN MY SPINE WHEN I PUT MY HEAD DOWN IT FEELS WEIRD. I HAVE TWO YOUNG KIDS AND IM NOT SURE IF THEY HAVE IT. MY NAN WHICH IS MY MUMS MUM DIED OF CANCER, BUT SHE ALWAYS SUFFERED WITH HEADACHES TO THE RIGHT SIDE.SHE NEVER HAD A STROKE BUT IM SURE IF TESTED SHE WOULD HAVE HAD CADASIL, DO YOU KNOW WHAT IT IS WHAT IS GOING TO HAPPEN TO ME, MY MUM HAS LOST SOME MEMORY AND IS NOT THE SAME HAPPY PERSON, I DONT WANT TO BE LIKE THAT IS THIS THE CADASIL, I WOULD LIKE TO HEAR FROM YOU PLEASE.

[cjb48]

Thanks. I will be checking it out. Wish me luck... lots to learn and what to expect..

[Quixotic1]

I knew nothing about it until I read your post.  I googled briefly and there is a CADISIL Foundation which has a website.  It also has info and a forum and a registry.  

the address is:

http://home.earthlink.net/~cadasil/

If this isn't helpful, come back and maybe I could find a few articles for you.

Quix