Cerebral Small Vessel Disease - How are you coping?

Thank you gor sharing your experience.

Dr Pulliam, years ago, told me I had this. I did not really pay attention at the time. I witsh that I had!!
Now, i have major problems with it!!
He told me do not bend over or put my head down like that. He was spot on. If i bend over with my head down, down i got in a faint.
Dr Pilliam said to tell every medical person who touches me that I have this vascular disorder/dieade???
I do, some ask: what is that? None seem to care.

It helps me knowing laying down makes it better for you. Laying fown definately help mr!!
Sorry about spelling, loosing my eye sight.... i have had two strokes. Seizures. Damaged nerves back of ryes.
I wish you all the best.
Rise slowly it help little.
Ann

@jeans ive had 3 strokes and only got told last year that i have a cavernoma thats been there tears but now its bled a few times. Hope your well

@nancywootten Hi Nancy, do you have any favorite dishes to eat? Do you have favorite cookbooks or chef online you watch for vegan fat free meals? I have not made a profile just yet but will soon. I have Atherosclerosis, I was told it was mild about 3 years ago. I have sick since in lots of different ways since. So I have not had to check since. I am almost afraid to check on it now. Eating low-fat and no meat would be great to do. I have done before in my life just not seriously like I want to now. I am waiting on an apartment. It will be even easier to eat this way after I move, Thanks for your time._____Carolyn

@foundryrat743 That is encouraging. Gives me hope.

I have found that neuroplasticity works! I worked with a physical therapist for about 6 months, on balance and gait issues. I started out shuffling, and now I walk better. i work in balance exercises too! There has been a gradual improvement!

Trying adapt to balance loss. Scary because not being used to it and the change hits you. I wonder if the brain will find new connections to compensate neuroplaciticy.

Hi @bdesteiguer - welcome to Mayo Clinic Connect. You have come to a good place for support. Feeling exhausted and mentally confused with a sore scalp and headaches would be a challenging way to live.

I'm tagging @4leigh @tcainaru @foundryrat743 @karen252 to see if they will share their experiences with you with CVSD and what they were told to do by their doctors. They also may know of a doctor you might see in your area in Seattle.

Bonnie - will you share more about the exhaustion you experience and how it affects your day-to-day life?

@lisalucier
Dear Lisa, I was recently diagnosed with small vessel disease and am looking for support. I have lots of appointments with doctors, but all they say is there's nothing I can do but exercise to keep the blood flowing in my brain, sleeping well and eating well. I am definitely doing that, but am still exhausted and mentally confused and with a sore scalp and some headaches. Is there really nothing else to try? I live in the Seattle area if anyone knows of someone knowledgeable about csvd in this area who might be accepting patients? I'd be interested in being in a research study or something, but it seems to be almost impossible to even get an appointment at the University of Washington. Thank you for your caring and time, Bonnie

@mwmc777 I have had several lacunar strokes, along with my small vessel brain disease diagnosis!! Also, I have had a couple terrifying episodes of A/fib!! Docs recently put me on the expensive blood thinner, Eliquis! Now, this week, I have been scheduled to have the Boston Scientific heart implant “The Watchman” put into an appendage within my heart, via a vein, accessed from high on one of my legs. A small titanium balloon device is to be inserted in my heart, permanently, that will stop clots from forming in my heart, during an a-fib episode! So, perhaps, this could be an option for you, too! My ‘operation’ is scheduled for March 11,2026! So, have you or your Doctor discussed ‘The Watchman’ possibility solution, in your case? Also, if there is anybody reading this, who has had a “Watchman” implanted in their heart, I would welcome comments, and advice. on how the procedure went, and is it helping with their a-fib problem? Like, has anybody had a stroke, after a “Watchman” implanted, and has it affected their brain small vessel disease? I hope, going forward, that you will have less problems with strokes and a-fib. Small vessel disease is a difficult diagnosis to deal with! Good luck!

Hi, @dle25 - wanted to check in with you to see how the brain fog, balance, headaches and fatigue are going lately?