Cerebral amyloid angiopathy

I have a question about amyloid angiopathy. I have been having a bad headache for the last few days and then on monday I had an incident. I was driving home which was only about 3 miles and in a neighborhood that I've lived in for 30 years. I was driving down the street heading for the street to turn and i couldn't figure out where to turn. I knew the street should be there but I couldn't figure where it was or even what the name was. Is it possible this could be caused by this disease-bleeding in the brain?

I am no expert, but it sure sounds like it to me. My mother also had a problems judging distances. Get a lot of rest and the best of healing to you.

I was diagnosed in 2010 wit Afib. I was put on an adult aspirin once daily. Then in January2015 I had a brain hemmorage stroke and was diagnosed with cerebral amyloid Angiopathy. I can no longer take any blood thinners of any kind, leaving me in quite a tight spot. I am 67 years old. I understand your concerns and I too have been considering seeing someone at Mayo who is very familiar with CAA.

@nanatessie, I wanted to follow-up with your concerning symptoms of disorientation and memory. Did you consult your doctor? Any news?

Thank you for checking. I did not check with the doctor because I wanted to see if it happens again. So far it hasn't. I keep having headaches so I'll probably call them next week

I also have been diagnosed with caa and am also on coumadin-blood thinner. Because I had a valve replacement in 2000, I don't have the option of coming of the blood thinner. They keep telling me because of this, it's going to get worse. But I have no choice. I am 69 yrs old. I'm sorry you're going through this

I've been diagnosed with Cerebral Amyloid Angiopathy. It's a rare brain disease for which there is no treatment. I am looking for someone who also has it whom I can share thoughts with.

@trishannabanana, you'll find discussions about cerebral amyloid angiopathy here in the Stroke & Cerebrovascular Diseases group (https://connect.mayoclinic.org/group/cerebrovascular-diseases/). I moved your message to this long running discussion about CAA here:
- Cerebral amyloid angiopathy: https://connect.mayoclinic.org/discussion/cerebral-amyloid-angiopathy/

I did this so you can connect more easily with fellow CAA members like @nanatessie @cbenson524 @surf362 @sistertwo @shedwina @jkrysman @sphillips1952 @oldkarl and more.

Trishanna, can you share a bit more about you? When and how did you learn of your diagnosis? How are you doing today and what do you find challenging?

You say that you have not read anything on line that says you can do something. Were you advised to monitor your blood pressure? The risk of a hemorrhage seems to rise with systolic blood pressure. A good target would be to keep blood pressure below 130 systolic. A better goal--if you can achieve it--would be to keep systolic blood pressure below 120. There also seems to be a lot of evidence in favor of a Mediterranean diet as well as regular exercise.

My husband had his first major bleed in 2019 and then another more prominent bleed in 2022. He also has had several micro-spells or bleeds. He is now 67 - he does golf and enjoys cooking (not as well as before CAA.) He has significant aphasia and can not drive - the state took his license away which has been a huge problem for him- he obsesses over figuring out ways to get it back - unfortunately with this diagnosis it is not an easy one. Our state lists vascular diseases and dementia as restrictions. We try to do things that bring us joy - I admit that it has been pretty depressing- sometimes I feel overwhelmed as he can't really read well and his judgment is not always understandable. I feel the weight of the household on my shoulders and am grieving what I thought was going to be a fun retirement. My prayers to all that care for people that have this awful disease and also the loved one that has to deal with CAA - it is such an unknown - almost like you are waiting for the other shoe to drop.... or not.