Cerebral amyloid angiopathy

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?

Since there is no treatment for it is there anything that can be done to lessen the head aches such as diet, medications, physical activity etc.

thank you. hard to carry on and have a normal life.

I am so sorry to hear this. I was also diagnosed with amyloid angioplasty during a MRI for a brain tumor. Needless to say I was very scared and upset. I went to the Mayo Clinic in Rochester for a second opinion. They were unable to confirm without previous years MRIs and then it might not be definite. My brain tumor was growing resulting with Gamma knife which unfortunately didn't work. I had 2 strokes that resulted in brain surgery in my home town. I was told by several doctors caring for me that the only was to definitely diagnose it was with a postmortem biopsy. I have agreed to donate my brain for research upon my passing so my family will know. We relocated to another city and I have had numerous MRIs that do not indicate possible Amyloid angioplasty. Personally if you haven't done it I would consider a second opinion.

One of my older brother had a stroke this February his Doctor today advised us that he has CAA we are heart broken. We do not know what the future holds for him, he does not understand the depth of his illness. We need help, can you help us?

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.

So sorry to hear your story, and definitely understand sometimes feeling overwhelmed. My husband was diagnosed with CAA in 2017 after having 2 episodes of numbness in his right arm; MRI showed small bleeds and other changes. Those episodes lasted 20 to 30 minutes and continued off and on for 6 months, then stopped. He had been having some cognitive issues before, most noticeable was the loss of his previously perfect directional sense. He was/is otherwise is great health, and we basically decided to forget about it till we needed to worry. We had almost 5 good years with no other symptoms, but in 2021 he had a major bleed (stroke) affecting his left side -- some difficult complications kept him in and out of hospital for a few months. He now uses wheelchair, walker, cane, depending on the circumstances. His being able to walk some is a great help, as he's able to go to the bathroom unassisted, etc. Cognition continues to get worse, but many people don't even notice. But he doesn't have the concentration to read anything more than a page or two and he can't do numbers at all, which was his prior specialty, never looks at his computer and even has trouble with the phone. He is now 81 and his physicals show him still in excellent health -- lucklily no heart or blood pressure or any other issues -- only thing wrong with him is CAA. I still work part time so we have a caregiver M-F from 11 to 5, which is a lifesaver for me. Trying not to worry about the future and missing the active life we had before are the hardest things for me. I find reading comments by others really helps me remember we are not alone.

Went to @gbiffart link for her story and it has been deleted.